TIF Magazine - issue 63 by Thalassaemia International Federation (TIF)

TIFMAGAZINE NOVEMBER 2013

Issue 63

Published by the Thalassaemia International Federation

www.thalassaemia.org.cy

1925: Cooley and Lee Description

1949-1960: Pauling, Mendelian transmission

2000+: New Oral Iron Chelators

1940-1950: Weatherall and Clegg, Hb chain synthesis 1986: Creation of Thalassaemia International Federation 1980-2000: Lucarelli, Bone Marrow Transplantation 2000+: Gene Therapy / Genotype - phenotype 2008-2013: Diagnosis, Monitoring, Treatment NTDTs (Non Transfusion Dependent Thalassaemia) / Research continues

1970-1980: Prevention - prenatal diagnosis / Transfusion therapy / iron chelation - WHO involvement: Desferoxamine

HIGHLIGHTS OF THIS ISSUE

• Internationalconferences, conferences, • International AbuDhabi Dhabi20-23 20-23October October2013 2013 Abu • SultanBin BinKhalifa KhalifaAward Award • Sultan Ceremony,20 20October October2013 2013 Ceremony, • Educational Programme • Educational Programme - Publications and Courses - Publications and Courses

TIF-Renzo Galanello Fellowship Programme, supported by Novartis

TIF-Renzo Galanello Fellowship Programme A major new programme has been established by the Thalassaemia International Federation (TIF), the “TIF-Renzo Gallanello Fellowship”, in honour of Prof Galanello, who did so much to advance research in the field of Haemoglobinopathies. Through this programme, TIF will support the specialised training of two medical professionals per year.The training periods will be January to April and September to December. The Fellowship is initially for the years 2014-16, with the possibility of being further extended. How to apply The Application Form is now available on TIF’s website (www.thalassaemia. org.cy).The Application Form should be completed and returned to the Thalassaemia International Federation, Cyprus, to the attention of Ms Maria Peletie, TIF Secretary, preferably by email, at thalassaemia@cytanet.com.cy or tif@thalassaemia.org.cy, or by fax at 00357-22-314552, with the subject line “TIFRenzo Galanello Fellowship”. The application should be accompanied by: 1. a complete Curriculum Vitae (CV) 2. two letters of consent to work in the field of haemoglobinopathies for at least 3 years at the candidate’s current institution of employment, one from the candidate and one from the director of the institution or from an appointed official of the Ministry of Health of the candidate’s country of employment, if the institution where the candidate is employed belongs to the Ministry of Health of that country 3. A reference letter of support and recommendation from the candidate’s current employers 4. The candidate’s choice(s) for the Optional Courses of the Training Program (please view the training program on TIF’s website - www.thalassaemia.org.cy). These must be denoted on the Application Form. 5. Proof of the candidate’s command of the English language. 6. Proof of official registration of the candidate as a medical specialist in the medical registry of his/her country/country of employment. Deadline: Applications should reach TIF by 30th November 2013. Late applications will be declined. Training Program The proposed draft Training Program is uploaded on TIF’s website (www. thalassaemia.org.cy) and the successful candidates will begin their training in September 2014, for the training period Sep. - Dec. 2014. More information available at www.thalassaemia.org.cy NOVEMBER 2013 www.thalassaemia.org.cy

FRONT COVER • Depicted in the Front Cover is “Ariadne’s Thread”, a myth from the Greek mythology and the illustration usage rights are bought from Shutterstock library.

Dear Friends, Welcome to the 63rd edition of TIF Magazine - an opportunity to share the latest news from TIF, updates on recent and upcoming events, as well as our vision for TIF going forward. Many of you will be well aware that TIF is working hard to provide an ever higher level of support to patients globally, moving towards our goal of integrating and prioritising haemoglobin disorders on national, regional and international health agendas - a prerequisite for the effective and sustainable implementation of prevention strategies and the delivery of quality health care to all. In addition to our educational programme, which includes publications, translations and the distribution of books, our ‘country programmes’ will continue to be upgraded, with a particular emphasis on building the patient community’s capacity for self-advocacy. Indeed, a recent evaluation of the current strengths and weaknesses of patient associations around the world highlighted the need to reintroduce this type of work, which will now be included in the wider vision of the Expert Patients Programme - a project that started in 2010. Another target is the development of e-educational platforms, both for patients and medical specialists, which we aim to complete over the next three years, complementing ongoing extensions to the TIF educational programme. Parallel to this, efforts are being made to create electronic patient registries and to support national health authorities in the effort to better plan and deliver effective services, but also to support patients themselves in monitoring and adhering to treatment. Meanwhile, assessments of issues related to blood safety and adequacy of supply have revealed critical problems to be addressed in a number of member countries. A significant step to this end included the organisation of a blood/viral hepatitis satellite workshop in the course of the international conferences in Abu Dhabi, and the establishment in 2012 of a network of collaboration with relevant patient communities and official health bodies (ISBT1, EASL2, ELPA3, WHA4 and others). TIF is also strengthening its collaboration with WHO5 Blood

Transfusion and Safety Department, as well as continuing to play an active part in the WHO’s Global Blood Safety Network. TIF is also pursuing efforts to establish or improve national transfusion services as a recognised prerequisite for safeguarding the quality of blood transfusions. TIF is also continuing to support academic and industry research on new antiviral drugs and will support the active involvement of thalassaemia patients in clinical trials prior to and during the development of drugs, fighting for the right of patients to receive prompt, optimal antiviral treatment when necessary and free of charge. Through its ongoing partnership with national health authorities, medical and patient communities and international organisations,including other diseaseorientated organisations such as those for Sickle Cell Disease and Rare Anaemias,TIF aims to establish joint plans of action requiring financial support to achieve essential reforms. TIF’s intervention in consultation processes to formulate relevant directives and regulations will continue to ensure that our voice is heard on critical issues, strengthening our work for patients worldwide. I must also underline the hard work and commitment of each and every member of TIF office staff in support of TIF activities, in particular the recent international conferences, which, I am confident, exceeded all expectations. The scientific programme covered a wide range of topics addressed by more than 70 specialists, while the patient/parent programme clearly reflected the intensive and longterm interaction and engagement of patients and parents to successfully address both thalassaemia and Sickle Cell Disease. This year, TIF’s country work has been intense and very productive. Important advances have been made over the last two years in Morocco, Algeria, Yemen, Afghanistan, Iran, India, China, Bulgaria, Romania, Germany, Indonesia, Vietnam and the Maldives, to mention just some.

ISBT = International Society of Blood Transfusion EASL = European Association for the Study of Liver ELPA = European Liver Patients’ Association 4 WHA = World Hepatitis Alliance 5 WHO = World Health Organisation 1

2 3

NOVEMBER 2013 www.thalassaemia.org.cy

TIFMAGAZINE

Foreword from the President and the Executive Director

Panos Englezos President

Dr. Androulla Eleftheriou

And TIF can now celebrate two very important achievements in its history of existence- the creation of SITA and the establishment of an official collaborating office with H.H. Sheikh Sultan Bin Khalifa Al Nahyan in Abu Dhabi. These two new developments will greatly contribute to TIF’s realization of its mission and objectives in the Middle East and North Africa region and beyond. We also mark the establishment of the Renzo Galanello Fellowship, in honour of late Prof Galanello, who did so much to advance research in the field. The Fellowship has attracted the generous support of Novartis for an initial duration of 3 years, adding significantly to our educational work by supporting the specialised training of two medical professionals per year. In terms of projects, TIF has worked very intensively over the past two years, finalising a number of projects in 2012 while others are in their final stages or yet to begin. All aim to achieve further improvements in the health and quality of life of patients with haemoglobin disorders everywhere in the world. Finally, I believe that we have significantly strengthened our communication system, with upgrades to the TIF website, regular e-newsletters and 8th of May International Day awareness activities, including the Ambassadors’ Circle, Red Day and much more. Going forward, our theme for 2014 is: ‘Economic Recession: Observe - Join Forces - Safeguard Health’. 6

SITA = Sultan Bin Khalifa International Thalassaemia Award

NOVEMBER 2013 www.thalassaemia.org.cy

As always, nothing could have been achieved without the support and trust of all our members around the world. We are a community that depends and thrives on the love, support and assistance of so many, in so many ways. We must each remember to applaud those efforts, whatever form they take, which combine to accomplish great things. As 2014 approaches, huge challenges lay ahead of us. Facing these challenges it helps to think of ...“the river, which cuts through the rocks not because of its strength but because of its persistence”.

We wish each and every one of you a happy, healthy 2014. Panos Englezos President Thalassaemia International Federation Dr Androulla Eleftheriou Executive Director Thalassaemia International Federation

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Contents Chief Editor: Dr. Androulla Eleftheriou TIF Editorial Team: Mikaella Panayiotou Liana Prastiti Matheos Demetriades Design and Layout: Design for Life Ltd - CY Editing Helen Perry Demetris Lambrou Printing: Cassoulides Masterprinters ISSN:1450-3093 TIF BOARD MEMBERS Panos Englezos President Shobha Tuli Vice President Loisos Pericleous Secretary Riyad Elbard Treasurer Her Highness Sheikha Sheikha Bint Seif Al-Nahyan Anton Skafi Christina Stephanidou Duru Malyali Fatemeh Hashemi George Constantinou Ivan Dimitrov Ivanov Loris Angelo Brunetta Michael Michael Mouna Haraoui Nailya Guliyeva Ramli Mohd Yunus Robert (Bob) Ficarra Saeed Jafaar Al-Awadhi

Foreword from the President and the Executive Director

TIF Activities Around The World

TIF’s educational Programme

International Thalassaemia Conference, Abu Dhabi

Featured Story: Winners of the Sultan Bin Khalifa International Thalassaemia Awards

8th of May - International Thalassaemia Day

Upcoming International Events

Calendar of Events

Obituaries

Member News

Patients’ Stories

Technical specifications for photographs 1. Photographs submitted for TIF Magazine should be in JPEG format (although .PDF and .TIFF are also accepted). 2. Photos should be “print quality”. This means: • The largest size possible. Please do NOT reduce the images! Send them either one by one via email, or alternatively on a CD. • High-resolution (at least 300 dpi). Please ensure that when transferring photos from a digital camera, a high resolution is selected. (How this is done depends on the camera model.) 3. All photos should have captions - a short text explaining what is happening in the photo and the names of the people in the photo. 4. It is the responsibility of the person submitting photos to ensure that any person(s) featured in them has given their permission to publish the photo. Disclaimer: Reproduction of material published in TIF Magazine for educational purposes is encouraged, provided it is accompanied by the following attribution “…according to TIF magazine, the official newsletter of the Thalassaemia International Federation”. The contents of any scientific article or presentation of any material by manufacturers does not imply the expression of any opinion on the part of Thalassaemia International Federation. The mention of specific companies or products does not imply that they are endorsed or recommended by TIF in preference to others. The contents express the opinions of the authors who alone are responsible for the views expressed. TIF does not accept any legal responsibility for their contents.

NOVEMBER 2013 www.thalassaemia.org.cy

TIF Activities Around The World TIF in 2013 has been an even busier one, with a considerable number of projects finalised or revisited, along with numerous delegation visits, field trips and workshops at the local, national and international level. Most of these visits have been a continuation of ongoing projects in various countries. This year’s objectives have been to strengthen relations with national health authorities and medical communities, to build capacity in patient/parent groups through workshops, and to encourage official international organisations (such as the WHO) and regional bodies (such as the EU7 and ASEAN8) to engage more actively in our activities. TIF’s engagement in: Eastern Mediterranean Region - EMR

Eastern Mediterranean Region

TIF has been very active in this region from the outset. Several countries of the eastern Mediterranean were amongst the first in the world to develop action plans related to the prevention and management of haemoglobin disorders, supporting TIF in its work and contributing to it. Overall, the region is exceptionally committed to controlling such genetic disorders, so that TIF’s work has tended to be tailor-made to specific issues. TIF reinforces communication with the W.H.O.Eastern Mediterranean Regional (EMRO) Other activities in this region include strengthening communication and collaboration with the Director of NCD’s at the WHO Regional Office for the Eastern Mediterranean. An official meeting will be held in Cyprus in January 2014, with the aim of identifying ways to further improve collaboration between TIF and the WHO in individual countries of the Eastern Mediterranean Region, as well as to develop common projects such as electronic patient registries and guidelines in the Arabic language for the management and prevention of haemoglobin disorders, taking into consideration cultural and social characteristics, but also building on successes achieved in many countries of the region. Strengthening collaboration in Abu Dhabi TIF has strengthened its activities through the establishment of a collaborating office in Abu Dhabi, founded in 2012. The organisation of two International Conferences in October 2013 in Abu Dhabi, along with 7 8 9

EU = European Union ASEAN = Association of South East Asian Nations NCDs = Non-Communicable Diseases

NOVEMBER 2013 www.thalassaemia.org.cy

delegation visits toYemen (February 2013) and Morocco (May 2013), constitute the first steps forward. Strengthening of the Middle East network of the Medical Community in the EMR - (Abu Dhabi 2013) Another important activity in this region has been the Pan Middle East meeting that took place in the context of the 13th International Conference on Thalassaemia and Haemoglobinopathies in Abu Dhabi in October 2013, where TIF met with members of the Middle East medical community, who attended the conference. The objective of this meeting was to capitalise on the wide-ranging, high-quality work initiated by the Middle East Thinkers’ Group/network a few years ago, under Professor Ali Taher and other distinguished medical specialists of the region. The vision of this meeting was to set up a better coordinated framework, in order to: (i) Strengthen collaboration between TIF and the medical community to achieve more improvements in the medical care, monitoring, diagnosis and prevention of haemoglobinopathies in each country of the region, and; (ii) Develop joint projects, including educational programmes, specifically meeting the needs of the region. Another important advance is the proposed Pan-Middle East Regional Conferences, an important educational event which will be organised by the network. Following a preliminary agreement, the 2nd Pan-Middle East Conference will be held in 2015, following on from the 1st Pan-middle East Conference that took place in Syria in 2009. Recent developments in Syria: TIF efforts to support Syrian refugees with thalassaemia TIF is making considerable efforts to support Syrian refugees with thalassaemia, who have found homes in nearby countries such as Turkey, Jordan, Lebanon and Iraq - work that is expected to continue for a number of years to come. Events in Syria as well as Egypt have highlighted the extreme suffering caused by civil unrest. In such situations, patients with a chronic illness such as thalassaemia face even greater difficulties. In an effort to increase awareness of the challenges facing patients in war zones, TIF has sought to raise the subject in key international forums. The following is an extract of the TIF President’s address to the WHO:

TIF helping Iranian patients in need TIF received a request from Iran to support 3,000 patients in need of infusion pumps as a part of their iron chelation therapy. TIF is in the process of making arrangements and contacting relevant bodies in order to identify channels of support in providing infusion pumps to patients in need. Sadly, political challenges such as the international embargo on Iran often directly lead to the deterioration of healthcare services, particularly those related to chronic patients. Supporting such cases constitutes a priority in TIF’s

activities around the world. Iran is a ‘model’ country in the region and beyond, in terms of the support offered to patients with thalassaemia. Yet it now faces difficulties in providing such patients with the continuous supply of life-saving drugs and medical devices, such as infusion pumps, necessary for their iron chelation.

TIFMAGAZINE

“Any war despoils human rights and, by extension, patient rights are completely overshadowed or violated during civil strife. This violation is further magnified when it comes to patients with special needs. The fact is that patients with thalassaemia require multidisciplinary care and other services in order to address their immediate needs for survival, particularly with respect to safe blood transfusions and iron chelation - the two major components for their survival. Indeed, patients with thalassaemia face a grave situation in Egypt, since reagents for ensuring safe and adequate blood as well as supplies of iron chelators have become a ‘scarce’ commodity, since the intensification of the war in their country. In this context, we would like to call upon your humanitarian spirit and kindly request your mediation and intervention with both the United Nations and the WHO in order to seek an urgent assessment of the situation of these patients in Egypt, with a view to instigating the appropriate relief actions. Indeed, swift actions may save the lives of these patients in desperate need… … Recapitalizing, the protection of the lives and rights of the patients with thalassaemia in the war-torn country of Syria is of utmost importance and we, as a patient organisation, are gravely concerned. Your swift actions will be highly appreciated.”

Making plans for Yemen and Afghanistan TIF has initiated a robust action plan aimed at helping patients in two countries in need, namely Yemen and Afghanistan. Although TIF has made a number of attempts to support the promotion of thalassaemia programmes in Yemen, a more persistent and coordinated effort is required. Following a visit to Yemen in 2013, TIF will be monitoring improvements in 2014, taking further action as needed. Due to obvious political challenges, Afghanistan has sadly not not received appropriate attention and support, although it has been high on TIF’s agenda as a country in need. A fact-finding visit and educational awareness event are being planned for 2014. TIF has already started collaborating with NGOs in Iran, while key medical specialists have expressed interest in supporting TIF’s efforts in Afghanistan. Positive steps made in Morocco TIF has completed a successful Delegation Visit to Morocco in May 2013, headed by Her Highness Sheikha Sheikha Bint Saif Al-Nahyan, TIF Board member and Chairperson of the Emirates Thalassaemia Society, accompanied by Mr Panos Englezos and Dr Androulla Eleftheriou, TIF President and Executive Director respectively, with a view to further strengthening collaboration with the national health authorities. TIF also visited the Lalla Salma Foundation, seeking to collaborate in efforts to sustain the momentum for further improvements in the country, pertaining to healthcare services provided to patients with haemoglobin disorders. Morocco is a country of great potential and we look forward to continuing our work alongside the new Director of the NCDs and Epidemiology Department of the Ministry of Health. In conjunction with this, we hope that the Haemoglobinopathy Task Force, referred to in the ‘Memorandum of Cooperation’ signed in 2011 between TIF and the Ministry of Health of Morocco, will be a first step in a joint plan of action, paving the way for further advances.

NOVEMBER 2013 www.thalassaemia.org.cy

Delegation vist to Morocco

Africa Region

Signing of a Memorandum of Cooperation

Africa Region - AFR

South East Asia Region-SEAR

Success in Algeria: Signing of a Memorandum of Cooperation; Exciting new developments in Algeria! A Memorandum of Cooperation signed between TIF (represented by Mr Costas Papageorgiou, a past president and Founding Member of TIF and President of the Hellenic Society for the Protection of Patients with Thalassaemia (PEPPAMA) and Professor Dimitris Loukopoulos, TIF’s Medical Maghreb coordinator) and His Excellency the Minister of Health of Algeria, Dr Abdelmalek Boudiaf, on 30 September 2013, aims to promote prevention programmes and the clinical management of haemoglobinopathies in Algeria. Algeria has made persistent efforts in the last few years, which are beginning to produce tangible results. We are very grateful to the medical community and the national health authorities for their support of TIF’s efforts in Algeria, recognising haemoglobinopathies as a priority on their national health agenda. This work led to the signing of the above-mentioned memorandum of cooperation, which is now being translated into a plan of action for the coming three years. TIF wishes to extend its appreciation to Prof Dimitris Loukopoulos, who has undertaken this project with such commitment, as well as applauding the commitment of Algeria’s medical community. A concise report and future activities of TIF in Algeria will soon be uploaded to the TIF’s website (www.thalassaemia.org.cy).

India: The Indian project In the South-East Asian region, TIF is focusing its efforts on building the capacity of patient/parent associations to develop appropriate infrastructures and to become more actively engaged in reforming policies relevant to the disease, while at the same time undertaking projects, studies and fundraising activities. The project is one of the biggest and most ambitious ever undertaken by TIF, beginning in India - a very large and populous country exhibiting a high frequency and great heterogeneity in the genotype/ phenotype character of haemoglobinopathies, a pattern repeated across the sub-continent.

NOVEMBER 2013 www.thalassaemia.org.cy

As part of the project, TIF has begun visiting India from November 2012 and will continue its visits until the end of 2013. These include two factfinding visits and two capacity-building workshops, the last one scheduled for December 2013. The project embraces seven states - Maharashtra, Gujarat, Madhya Pradesh, Delhi, Punjab, Haryana and Uttar Pradesh, covering almost two-thirds of the population and several thousand patients. A specific roadmap has been set up for each state, tailored to needs and competencies and identifying focal points for action. TIF is very confident of the improvements this project will bring about, following long and valuable collaboration with many Indian patient/ parent associations, such as Thalassemics India, a TIF Voting Member that has been represented on the TIF Board, and the Federation of India Thalassaemics, for a number of years.

South East Asia Region

TIF’s strong presence in China Similar activities have been ongoing for some time Western in China, which has a similarly large population and Pacific where haemoglobin disorders are highly prevalent, Region particularly in the Southern provinces. TIF has visited China five times in the recent years, culminating in an official high-level visit from Guangxi, headed by the Governor of Guangxi, Mr Ma Biao and Dr Li Guojian, Director of Health Services, when a Memorandum of Cooperation was signed between TIF and the provincial health authorities of Guangxi province in 2011.TIF organised a number of workshops for medical specialists, key public health officials from highly affected Southern provinces and parents/patients in 2009 (Guangzhou city, province of Guangdong), 2011 (Nanning city, province of Guangxi) and 2012 (1st panSouth China Workshop). Another High Official Delegation from the Chinese Central Government National Health and Family Planning Commission (NHFPC) visited TIF in 2012 and elaborated on measures to strengthen collaboration between TIF, Cyprus, and China. These efforts culminated in a workshop on prevention and management, co-organised by the NHFPC, the Guangdong provincial health authorities and TIF, held in Guangzhou City, Guangdong province in November 2013. The scope of the workshop was to provide evidenced-based information about how prevention and control programmes for thalassaemia in other countries have had successful outcomes, the aim being to strengthen prevention programmes in the context of China’s own genetic and birth defects programmes, with a specific emphasis on Hb disorders in the Southern part of the country, where these diseases are most prevalent. In addition to Central Government and Provincial officials and leading academic staff, participants at this workshop included high level representatives from TIF and the WHO. In addition to capacity-building and supporting patients and parents, the objective of TIF’s work in China is to establish the control of haemoglobin disorders as a priority on national, provincial and regional health agendas, in the context of ongoing major healthcare reforms. Finally, another workshop is scheduled for January 2014, which aims to focus on the specific needs and challenges China faces regarding the management of 10

Hb disorders, in particular thalassaemia.This workshop will be policy-oriented and based on the conclusions of previous work done in China. The objective is to support in as many ways possible patients with Hb diseases in the southern provinces of China where βand α-thalassaemia syndromes are most prevalent. China has made great advances in recent years and is now entering a critical phase, during which, the integration of national policies on haemoglobin disorders needs to be prioritised and further integrated into other policies and programmes. We are confident that TIF’s ongoing efforts to that end will make a considerable impact in the future. Thalassaemia and sickle cell disease on ASEAN’s agenda (SEA and WP regions) ASEAN is an important Asian policy-making body, bringing together countries that include Indonesia, Thailand, Malaysia, Singapore, the Philippines, Vietnam, Myanmar, Brunei Darussalam, Cambodia and Laos. As a result of TIF’s persistent efforts over 2012 and 2013, thalassaemia and sickle cell disease are expected to be on the agenda of ASEAN health ministers, when they meet to identify priority diseases in the region. An official document (‘Concept note’) prepared by TIF was presented at the last SOMHD10 that took place in Singapore in August 2013. (Read more on TIF’s website.) Following the SOMHD in August 2013, the next ASEAN high level meeting in the field of health is the Health Ministers’ meeting, scheduled to take place in Vietnam in 2014. What lies ahead in SEAR and WPR Regions Considerable challenges lie in ahead many other countries of the SEA and WP regions, including Bangladesh, Nepal, Myanmar, Laos, Cambodia, and Vietnam, to name but a few. For some of these aforementioned countries, which expressed interest and commitment, both on the side of the medical and patients’/parents’ communities, but also, very importantly, from their Governments’ side, including Vietnam and Cambodia, specific plans of action have been drafted by TIF for 2014 and beyond, hoping that the other countries mentioned above will join us on the way. Some of these, including Bangladesh, Nepal and Myanmar have already done considerable work in the area of thalassaemia, but require better coordination and government support to produce better outcomes.

SOMHD = Senior Officials’ Meeting on Health Developement NOVEMBER 2013 www.thalassaemia.org.cy

TIFMAGAZINE

Western Pacific Region-WPR

Last but by no means least, TIF is also monitoring very closely Indonesia, the Philippines, and more recently the Maldives, countries which have made great advances the past few years. More information about these activities can be found on TIF’s website (www.thalassaemia.org.cy). Europe - EUR

Europe Region

“Thalassaemic Doctors” created by the Pan-Hellenic Association for the Protection of Thalassaemia Patients (Parents Association)

Tailor-made policies to meet the needs of European countries TIF activities in Europe to date have focused on individual countries such as Albania, Bulgaria, Germany, Belgium, Spain and the UK, each of which have quite different needs with regard to haemoglobin disorders. In some countries, such disorders are accorded a high level of prioritisation on national health agendas, while in others they are extremely low. For example, in Albania, there has been a need for training of medical staff on the use of MRI T2*, in order to better monitor patients’ iron chelation. The lack of multidisciplinary care is also a major concern. In Germany, work has focused on supporting cooperation between patient organisations and on engaging patients in efforts to secure further improvements in health care services and quality of life. Despite the fact that Germany has a generally excellent national health system, work is also needed to improve the coordination of multidisciplinary care across the country. A key challenge in Bulgaria is to inculcate a better understanding of criteria for the creation of reference centres and networking across and outside the country. In Greece, efforts are focused on supporting patients and protecting the hard-won advances that were the result of many years of hard work and which are now at risk as a result of the austerity measures affecting much of Europe. To that end, TIF has presented national health authorities with tangible evidence, underscoring the importance of a strong national prevention programme on the grounds of robust health and economic management. The 4th Pan-European Conference, organised with the cooperation of the Greek Thalassaemia Federation, is due to be held in September 2014. The creation of a network of thalassaemia/SCD medical specialists, who are patients themselves, in Greece - the first step in developing a global such network - is an indication of what can be achieved when individual determination and persistence are complemented by official commitment and support. 11

NHAs = National Health Authorities

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Steps and progress in the Russian Federation TIF is to make strong representations to the government of the Russian Federation, in a bid to persuade authorities to include thalassaemia on a shortlist of priority diseases. The decision follows reports that the Russian Federation has compiled a shortlist of 24 life-threatening orphan diseases that does not include thalassaemia. Although the guidelines for standards of care for thalassaemia are mandatory across the country, no funding is provided and patients must often pay out-of-pocket for diagnostic tests, monitoring and treatment. Nonetheless, other important issues have received attention, such as a national patients’ registry, established by the eminent academic, Prof Natalya Smetanina. TIF is confident that the Russian Federation NHAs11 and the medical community will continue to make progress in their efforts to control thalassaemia, which is becoming increasingly prevalent in big cities, especially as a result of population movements from the Southern part of the country and from countries across its South-East borders, where this disease is highly prevalent. Europe, are you ready? EU Policy Report on Migration and Haemoglobinopathies TIF presented on 26 June 2013 an important report to the European Parliament on the need to strengthen European policies regarding haemoglobin disorders, under the auspices of Ms Antigoni Papadopoulou (MEP for Cyprus, Progressive Alliance of Socialists and Democrats), and Ms Marina Yannakoudakis (MEP for the UK, European Conservatives and Reformists Group).This report is available on our website. Further declarations are planned, as well as a European Policy Report, to be presented at meetings and workshops for national health authorities across Europe, and further discussed at the Greek Thalassaemia Workshop, to be held in December 2013.

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Participation at EHA12 - Stockholm (14 - 16 June 2013) A TIF delegation headed by Mr Panos Englezos (TIF President) accompanied by Dr Androulla Eleftheriou (TIF Executive Director) and supported by Ms Lily Cannon (TIF European Affairs Officer) and Ms Maria Apostolidou (TIF PR & Communications Officer) attended the 18th Annual Congress of the European Haematology Association (EHA) held in Stockholm on 14-16 June 2013. An active member of EHA’s Patient Advocacy Group, TIF had a strong presence in the patient programme, which focused on the inclusion of patients with haematological diseases in clinical studies. A parallel workshop discussing the establishment of a pan-European presence for patients with haematological disorders was also organised. The Conference also provided an opportunity to distribute the recently-published Guidelines for the Clinical Management of Non-Transfusion Dependent Thalassaemias (NTDT) and other TIF publications to delegates from across the world.

Depicted in the picture are TIF’s Guidelines for the Clinical Management of Non-Transfusion Dependent Thalassaemias (2013), which were distributed to delegates during the conference.

EHA = European Haematology Association

Participation of TIF in liver disease association NGOs and educational event TIF Board Member George Constantinou, Assistant Secretary, participated in an International Multi-Stakeholders Meeting organised by the European AIDS Treatment Group and ELPA in Brussels. The agenda included the topic of “Pathways to provide access to novel HCV compounds to people for whom they are not authorised yet, but who have no alternative treatments.” Advocacy Meeting on Non-Transfusion Dependent Thalassaemias (NTDTs) (April 2013) Patient representatives from countries of ten national thalassaemia associations, including an official

TIF representation, met in Zurich for a two-day Advocacy Meeting on Non-Transfusion Dependent Thalassaemias (NTDTs). The meeting aimed to identify ways to raise awareness about NTDTs and to meet the educational and support needs of patients with NTDTs. The findings of a pre-meeting survey highlighted the fact that NTDTs have been ignored and marginalised for many years, resulting in a lack of awareness and limited knowledge amongst patients as well as health professionals. The meeting strengthened TIF’s commitment to advocate for the rights of patients with all thalassaemia syndromes, on behalf of the global thalassaemia family.

NOVEMBER 2013 www.thalassaemia.org.cy

TIF’s educational Programme TIF’s educational Programme consists of two important components: (ι) The organisation of educational events, conferences, workshops and seminars at a local, regional and international level. TIF has organised more than 100 conferences, workshops and seminars at the international, regional and national levels over the past 20 years, attended by more than 25,000 patients, parents, health professionals, academics and industry representatives from 62 countries. (ιι) Publications: TIF has published 19 books and pamphlets, translated into many languages and distributed free of charge across 62 countries. Four new books were published in 2013, along with revised versions of a further two publications (see below). A revised edition of Guidelines for the Clinical Management of Transfusion-Dependent Thalassaemias is expected to be finalised in early 2014. In 2013 alone, requests for TIF publications totalled some 6,500. TIF PUBLICATIONS IN CIRCULATION • Guidelines for the Clinical Management of Non-Transfusion Dependent Thalassaemias (Cappellini M D, Taher A, Musallam K) • Community Awareness Booklets on α-thalassaemia, β-thalassaemia & Sickle Cell Disease (Greek). (Eleftheriou A) • Prevention of Thalassaemias and other Haemoglobin Disorders, Vols I and II -2nd Edition (Old J, Galanello R, Eleftheriou A, Traeger-Synodinou J, Petrou M, Angastiniotis M) • Emergency Management of Thalassaemia (2012) (English). (Porter J, Taher A, Mufarij A, Gavalas M) • A Guide to a haemoglobinopathy nurse - TIF • Sickle Cell Disease: Guidelines for the Clinical Management of Adults and Children (Greek). (Translated by Farmakis D) UPCOMING TIF PUBLICATIONS • Sickle Cell Disease: A booklet for parents, patients and the community, 2nd Edition (Inati-Khoriaty A) • Community Awareness Booklets on α-thalassaemia, β-thalassaemia & Sickle Cell Disease (English). (Eleftheriou, A.) • Guidelines for the Clinical Management of Transfusion Dependent Thalassaemias, 3rd Edition (Cappellini, M.D., Cohen, A., Eleftheriou, A., Piga, A., Porter, J., Taher, A.) • Sickle Cell Disease: A booklet for parents, patients and the community, 2nd Edition (Inati-Khoriaty, A) • Emergency Management of Thalassaemia (2012) - (Greek). (Porter J, Taher A, Mufarij A, Gavalas M)

ORDER YOUR BOOKS! free of charge All our publications are available as PDF files on our website, completely free of charge.

Hard copies and CD-ROM or DVD versions can be ordered directly from TIF and are distributed free of charge. Place your order at thalassaemia@cytanet.org.cy The translation of TIF’s educational publications into various languages continues in 2013. All translated publications are or will become available on our website. Check with us to get updated on the latest translations!

Please visit our website at “www.thalassaemia.org.cy/educational-programme/publications”

NOVEMBER 2013 www.thalassaemia.org.cy

13 TIFMAGAZINE

NOVEMBER 2013 www.thalassaemia.org.cy

International Thalassaemia Conference, Abu Dhabi Executive Summary of the TIF 2013 World Congress TIF’s World Congress, held on 20-23 October 2013 in Abu Dhabi, brought together two of the largest events ever held under its educational programmethe 13th International Conference on Thalassaemia and Haemoglobinopathies, and the 15th Conference for Patients/Parents. The Congress involved nearly 2,000 participants from 48 countries, offering a unique opportunity to network with an international audience of patients and their families, as well as medical professionals and researchers, and to gain insight into the latest developments around the globe.

groups around the world. Sincere thanks also, to the speakers and chairs of each session, and to the many scientists who submitted abstracts or posters. Important conference highlights, included the scientific programme, delivered by the largest ever number of medical and scientific experts (70 in total) and covering perhaps the widest range of topics to date, carefully formatted to encourage interaction and debate on critical issues. The patient/parent programme, prepared by patients and parents to cover a wide range of topics related to both thalassaemia and sickle cell disease

These biennial Conferences are organised by TIF and hosted by a national thalassaemia association, selected by the TIF Board of Directors two years before the event. In the course of this year’s Conferences,TIF and the recently established regional collaborating office in Abu Dhabi received invaluable support from the H.H. Sheikh Sultan Bin Khalifa AlNahyan Humanitarian and Scientific Foundation, the Sultan Bin Khalifa International Thalassaemia Awards (SITA), H.H. Sheikha Sheikha Bint Saif Al-Nahyan, Conference co-chairperson and a member of the Board of TIF, the Emirates Thalassaemia Society and the UAE Tourist Board. TIF also wishes to thank all those who worked so hard behind the scenes, including the PCO, Meeting Minds, and Dr Mahmood Taleb Al-Ali, SecretaryGeneral of SITA, whose exceptional professionalism and dedication resulted in a unique forum for cooperation between medical specialists and patients and parents.TIF would also like to offer special thanks to Mr Abdul Baset Mohamed Merdas, Mrs Khalida Khammas, Dr Essam Dohair and Mr Saeed Al-Awadhi of the Emirates Thalassaemia Society, whose initiative in establishing a Global Thalassaemia Societies’ Village promises to produce vital ties between patient

syndromes, bringing to the fore new and emerging concerns as well as persistent, unresolved issues-again, with a focus on encouraging discussion and interaction between participants and building capacity. In addition, five ‘satellite’ meetings were organised, further enriching knowledge in key thematic areas. Three were organised by Novartis, the conferences’ Diamond sponsor, covering non-transfusion dependent thalassaemia, and clearing iron from the heart and liver. Another satellite meeting was organised by the conferences’ Platinum sponsor, Apopharma, focusing on new strategies for the treatment of thalassaemia, while TIF’s satellite event addressed long-standing concerns on blood safety and viral hepatitis-critical issues in overall patient health. A wide range of additional information was available from the Exhibition Booths’ area, offering a dynamic perspective on key Conference themes, carefully realized by the PCO with the help of our partners in the pharmaceutical industry. The Conference also marked the launch of a new project, referred to as ‘NTDT Voices’, through which TIF aims to inform, educate and raise awareness about non-transfusion dependent thalassaemias, the clinical significance of which has been under-recognised

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15 TIFMAGAZINE

by the medical/research and health policy-making communities alike. However, dramatic advances in the field over the last four years have opened the way to better and early diagnosis, monitoring and treatment of complications associated with these syndromes. Dr Eleftheriou, who contributed to this special event, said: “Thanks to the scientific and medical advances achieved in the last few decades, we, the patients community, feel safer and more confident on how to better monitor and treat now thalassaemia major and all other α- and β-thalassaemia syndromes, as well as SCD.” “We have new wings, new hopes and expectations and we have a truly strong a light that guides us away from darkness. The scientists have truly stretched and unfolded ‘Ariadne’s thread’ taking us out of the labyrinth!”

The World Congress also provided an ideal platform for the launch of a new training programme in the haemoglobinopathies, in memory of Prof Renzo Galanello. The programme, established by TIF with the support of Novartis, entails the training of two medical specialists each year at an accredited haemoglobinopathy reference centre.There can be no better way to honour this great man and his vast contribution to the field as a doctor, as an academic and as a researcher.

TIF President, Mr Panos Englezos, opening the TIF World Congress, said: “For some time now, patients, in some countries, have been productive and very valuable stakeholders in the developing and reforming of policies that are relevant to the management and prevention of haemoglobin diseases but also to the general health and quality of life of chronic patients. Therefore, our effort is to make patients from all over the world and not just a few countries, as productive as possible and to help them transform into valuable stakeholders in every healthcare system. That is why TIF is revisiting its efforts towards capacity building of patients’ advocates/associations and the capacity building workshops in the context of the patients/parents programme is our new fresh start!” He added: “I wish to thank every member of the Board of TIF, past and present, for their hard work, close collaboration and the confidence and trust they have bestowed upon me in realising the Federation’s goals. Also, very importantly, the TIF office staff, under the leadership of Dr Eleftheriou, who have as always, worked tirelessly and with passion, professionalism, enthusiasm and whole-hearted commitment towards making this conference a truly unforgettable educational and social experience for all participants.”

Conference Abstracts and PowerPoint Presentations Available soon on www.thalassaemia.org.cy

NOVEMBER 2013 www.thalassaemia.org.cy

Quotes from Conference Participants

Abdul Baset Mohd Merda,Vice Chair Person, Emirates Thalassaemia Society , UAE

“With your enthusiasm, love and appreciation, we have achieved even more than we expected.”

Duru Malyali, TIF Board Member, Turkey

“The Abu Dhabi Conference was a great success and a well organised event. With this dedication, I know very well that we will continue our workshops to spread knowledge and inform thalassaemic patients and their parents about thalassaemia, and all recent developments.” Ersi Voskariou, Head of Thalassaemia and Haemoglobinopathies Centre, Athens, Greece

“Allow me to congratulate you for successfully carrying out the TIF World Congress and to wish health and strength in the continuation of your work, not only to you but also to all your collaborators, who unanimously applaud your exceptional professionalism.” Bob Ficarra, TIF Board Member, USA

“Congratulations again for your hard work and dedication to the thalassaemia community worldwide. You have made TIF what it is today and truly made a difference in so many lives. Thank you for all you do.” Ahmet Varoglu, President, Turkish Cypriot Thalassaemia Association

“I would like to thank you all for giving me the opportunity to give a presentation at the TIF Congress 2013 in Abu Dhabi, which was a great honour for me and was a good experience for future events.”

Zina Thaifa, EGM Oncology Regional Brand Lead, Novartis Pharm AG

“The conference is a unique opportunity for patients and physicians to meet, discuss, brainstorm, network and work together. I have never seen that before in my experience as a doctor for any other disease.” Dr Dahmani Halima, General Medicine Practitioner, Annaba, Algeria

“I was pleased to participate in this conference and I was very satisfied because it was beneficial to me as a doctor and a patient.” Ahmed Afifi, Novartis Pharmaceuticals Corporation, New Jersey, USA

“Congratulations on a wonderful conference. I have attended many TIF congresses and this is by far the best. I can only imagine the hard work, passion and dedication behind it.” Aishaz Shehenaz, Ambassador of Maldives to the UAE

“It was a pleasure meeting you at the conference. Thank you very much for giving me the opportunity to get an overview of the latest developments in the field of thalassaemia, SCD and other rare anaemias.” Dawn Adler, USA

“I want to thank you for the continued support given to patients who attended the conference and experienced what I did almost 20 years ago in Cyprus. The conference changed my life in many ways!”

Mohamed El Missiry, National Research Centre, Cairo

“Congratulations to TIF for the non-stop work and I hope for success.” Anthony Viola, President of Cooley’s Foundation, USA

“It was a great experience and I really enjoyed it.”

NEXT ISSUE Look out for presentations from the 13th International Conference on Thalassaemia & Haemoglobinopathies & the 15th TIF International Conference for Patients & Parents. Abstracts and presentations will also be available soon on our website.

NOVEMBER 2013 www.thalassaemia.org.cy

Thalassaemia Awards honoured in Abu Dhabi The winners of the Sultan Bin Khalifa International Thalassaemia Awards (SITA) for excellence in the haemoglobinopathies were officially honoured on 20 October 2013, in a majestic event hosted by H.H. Dr. Sheikh Sultan Bin Khalifa Bin Zayed Al Nahyan in Abu Dhabi, attended by distinguished personalities from the region and beyond. (Winner names, profiles and research interests are presented below.) By recognising outstanding research into the prevention, management or cure of haemoglobino-pathies, the SITA awards play an extremely important part in realising TIF’s mission. The awards will be made every two years and include both monetary and non-monetary prizes. More than 300 applications were received for the six international and 14 national categories of award in 2013, from individuals and groups of scientists.

(USA), Prof Dimitris Loukopoulos (Greece), Prof Suthat Fuscharoen (Thailand), Prof Maria D. Capellini (Italy), Prof John Porter (UK) and Dr. Androulla Eleftheriou (Cyprus). The profile of this year’s SITA winners are as follows: Personality of the Year Award: Sheikh Hamdan bin Rashid Al Maktoum, Deputy Ruler of Dubai and Minister of Finance The International Award categories Sultan Bin Khalifa Grand International Award for Scientific Achievement The Sultan bin Khalifa Grand International Award for Scientific Achievement ($20,000 prize) was shared between: Prof David Nathan (USA) Prof David Nathan has been involved in numerous advances in medicine, including his team’s development of the first prenatal diagnostic test for thalassaemia and sickle cell anaemia and the introduction of hydroxyurea (HU) for the amelioration of sickle cell anaemia. Dr. Nathan also developed the first successful treatment for iron overload, subcutaneous deferoxamine, for thalassaemia patients undergoing chronic transfusion therapy.

Prof Sir David Weatherall, UK (top left), Dr. Androulla Eleftheriou, Cyprus (top centre), Prof Dimitris Loukopoulos, Greece (top right), Prof Maria D. Capellini, Italy (bottom left), Prof Suthat Fuscharoen, Thailand, Prof John Porter, UK, Prof George Stamatoyiannopoulos, USA(bottom right)

SITA is the result of an initiative of the H.H Sheikh Sultan Bin Khalifa Al Nahyan Scientific Humanitarian Foundation, designed in collaboration with the Thalassaemia International Federation. The SITA awards are a major and much-needed addition to those established by TIF since 1994 - the Panos Englezos Award for contribution to the community and the George Englezos Award for international scientific contribution - promising to bring thalassaemia and other haemoglobinopathies to the forefront of international political and health agendas. Winners of the SITA awards are selected by the Higher Scientific Committee, comprising Prof Sir David Weatherall (UK), Prof George Stamatoyiannopoulos

Prof Phaedon Fessas (Greece) Prof Fessas has made a range of original contributions, including establishing that thalassaemia is the result of unbalanced globin-chain synthesis. He was also responsible for the identification of various variant haemoglobin and thalassaemia types and their interactions, observation of the “fast” fraction in newborns with α-thalassaemia (later named Hb Barts) and description of the Greek type of hereditary persistence of foetal haemoglobin, δβ-thalassaemias, Hb Pylos. Prof Prawase Wasi (Thailand) Prof Prawase Wasi has made several major contributions to the field of thalassaemia, including the discovery that there are two alpha-globin genes in one chromosome. He has also been involved in many pathophysiological studies of the disease, describing many new syndromes. Prof Wasi established the Asian Network for Thalassaemia Control and has undertaken research, resulting in approximately 200 publications.

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TIFMAGAZINE

Featured Story: Winners of the Sultan Bin Khalifa International

Sultan bin Khalifa International Award for Leadership in Thalassaemia (non-monetary award): Prof Ali Taher (Lebanon) Prof Taher has published over 350 articles in leading peer-reviewed international journals. He was the principal investigator on key clinical trials evaluating the efficacy and safety of iron chelation therapy in regularly transfused (ESCALATOR) and nontransfusion-dependent thalassaemias (THALASSA). Dr Taher participates in studies of large collaborative networks (such as the NIH-funded Thalassaemia Clinical Research Network) and has played a leading role in promoting collaboration in research and studies among Middle East countries.

Sultan bin Khalifa International Award Ceremony

Sultan bin Khalifa International Award for Innovative Research in Thalassaemia ($20,000 prize): Prof Michel Sadelain (USA), Memorial Sloan-Kettering Cancer Centre, New York Prof Michel Sadelain is Director of the Centre for Cell Engineering at Memorial Sloan-Kettering Cancer Centre. He is a pioneer and internationally recognised leader in developing a stem cell-based treatment for beta-thalassaemia. The first trial in the US evaluating this treatment, in which patientsâ&#x20AC;&#x2122; own blood-forming stem cells are engineered to carry a normal copy of the beta-globin gene, is now being conducted at Memorial Sloan-Kettering Cancer Centre. Dr Sadelain is also focused on developing treatments for cancer patients that make use of an approach called adoptive cell transfer (ACT). Sultan bin Khalifa International Award for Clinical Centre of Excellence ($20,000 prize): Siriraj Hospital Thalassaemia Centre Mahidol University, Bangkok (Thailand). Siriraj Hospital Thalassaemia Centre has been actively involved in a wide range of research programmes and has the largest number of publications on the management of Hb disorders. As such, it constitutes a leading centre of excellence in the region. Sultan bin Khalifa International Award for Thalassaemia Society of Excellence ($20,000 prize): Cooleyâ&#x20AC;&#x2122;s Anaemia Foundation (USA). The Cooleyâ&#x20AC;&#x2122;s Anaemia Foundation was the first national parent/patient support group ever established. It has made a vast contribution to the promotion of research programmes for the diagnosis, management and cure of thalassaemia and sickle cell disease, as well as bringing haemoglobin disorders to the forefront of

NOVEMBER 2013 www.thalassaemia.org.cy

the US health agenda. It has contributed significantly and uniquely in the promotion of prevention programmes in several US states, the provision of educational information to patients and the raising of awareness across the country. The Foundation has also recently played a key role in the promotion of reference centres in a number of US states.

Sultan bin Khalifa International Scholarship for Translational Research in Thalassaemia ($60,000 prize): Dr Juliano de Lara Fernandes (Brazil) The work of Dr Juliano de Lara Fernandes on iron overload and thalassaemia began in 2004, when he initiated studies of heart and liver T2* by MRI, working with patients from Centro Infantil Boldrini and State University of Campinas. Since then, over 700 examinations have been performed under his direct supervision. Dr Fernandes is an active member of contributor to many international societies in Cardiovascular Imaging and serves as a Scientific Adviser to the Brazilian Association of Thalassaemia (ABRASTA). He has published more than 40 articles in peer-reviewed journals, as well as being involved in training at a large number of imaging sites around the world, including many in the Middle East. His current focus is on improving the cost-effectiveness of MRI assessment for iron overload, with a view to making it available to every patient that requires it, as well as research into new, affordable and accessible treatments to prevent tissue iron overload. These prestigious awards endeavour to further motivate researchers and those working in medical/ clinical fields to improve the health and the quality of life of patients with thalassaemia, by recognising and celebrating their unique and significant contributions. It is beyond any doubt that the SITA initiative will have a major impact on ongoing efforts to promote further research in the field at both the regional and the international level.

Every year since 1994, TIF and the wider thalassaemia family have celebrated International Thalassaemia Day on the 8th of May, in memory of all those patients, parents and families who have fought for a better future for those affected by the disease.Their immense altruism, passion and commitment have have paved the way for all of us to continue their fight. TIF’s internationally renowned educational program constitutes one of the most powerful means of achieving its mission of raising awareness for haemoglobinopathies around the world - a mission more relevant than ever on the 8th of May. As part of the activities to mark the 2013 International Thalassaemia Day, TIF organised a series of events at its headquarters in Cyprus, alongside an everincreasing number of thalassaemia associations around the world. YEAR PARTICIPATING COUNTRIES 2008 18 2009 25 2010 36 2011 48 2012 56 2013 56

schools across Cyprus. As part of that programme, the TIF Red Team visited the Grammar Junior School in Nicosia, where students formed the number ‘8’ in their school yard. TIF distributed a campaign kit to children containing the official 2013 International Thalassaemia Day poster, a video with patients’ stories and a special-issue postage stamp, dedicated to the 8th of May. This year’s 8th of May activities were supported by IAPO and EPHA and were extremely well publicised, including an IAPO article on International Thalassaemia Day, published in its online newsletter, while the EU Health Commissioner, Tonio Borg, issued a message marking the day on the European Commission’s website. The 8th of May offers an invaluable opportunity to increase knowledge and awareness of haemoglobin

PARTICIPATING ASSOCIATIONS 32 48 59 65 84 95

TIF organised a press conference on the day as well as an exhibition of Dr Michalis Psiloinis’ artwork, while the Cyprus Blood Centre in collaboration with Nicosia Municipality, the athletic group PANSYFI Apoel and the Nicosia Fire Station held blood drives on behalf of the Thalassaemia International Federation. TIF also initiated Project 8, which aims to spread knowledge and expertise regarding the haemoglobinopathies, particularly amongst young people. The project includes a Red Day, held at

disorders. TIF is particularly proud of its success this year in targeting official stakeholders, clearly stating that Thalassaemia International Federation remains determined to overcome any obstacles interfering with its mission to establish equal access to quality healthcare for all the patients with thalassaemia. It is hoped that TIF’s efforts serve to encourage and inspire patient associations everywhere to intensify their activities to mark this important day.

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TIFMAGAZINE

8th of May - International Thalassaemia Day

Students from Grammar School in Nicosia

TIF theme for 2014: “Economic Recession: Observe - Join Forces - Safeguard Health” The theme for 2014 revolves around the idea of strength in unity,as patient organisations continue their efforts to promote and secure patients’ fundamental rights, in line with those set out in the EU Charter (2002). The basic principles outlined in this document are universal: we must seek to establish and defend them in countries around the world, not least in a time of economic austerity - the global phenomenon of today. Join us in our efforts to make the 8th of May 2014, the biggest and best yet. Check the TIF website and Facebook page for activities, and look out for a special 8th of May webpage and blog, where members can discuss and share their ideas.TIF also plans to launch a competition for the most innovative way to mark the day.Visit our website for further announcements! OTHER NEWS The new website is here We are excited to announce that our new webpage has finally gone live at www.thalassaemia.org.cy. Check out the great range of information available, and let us know your thoughts. We hope that you find it fun, useful and user-friendly. We welcome your feedback and comments. European Network for Rare Anaemias-ENERCA The European Network of Rare Congenital Anaemias is an EU-funded project on rare anaemias, which TIF has been working on for over four years.The current phase of the project, known as e-ENERCA, is being led by TIF and involves the development of electronic patient records and an electronic platform for the education of the medical and patient community. Renzo Galanello Training Fellowships, sponsored by Novartis TIF has accepted the first applications for the Renzo Galanello Training Fellowships Programme, which offers interested medical specialists a 4-5 months’ training at one of two Haemoglobinopathy Reference Centres in Europe. Prof Renzo Galanello, an international expert from Italy in the field of haemoglobin disorders, lost a seven-month battle with cancer on 13 May 2013. TIF and the whole thalassaemia family grieve for this loss and express their deepest and most sincere condolences to his family and colleagues at Cagliari, south Sardinia, Italy. To commemorate the life of

NOVEMBER 2013 www.thalassaemia.org.cy

this great scientist, TIF launched a new fellowship program, the TIF-Renzo Galanello Fellowship, as part of TIF’s Educational Programme, offering physicians, specialists in the field of haematology, paediatrics or internal medicine, further training. Improving knowledge of the holistic care of thalassaemia and sickle cell disease has been a TIF priority since its establishment. However, many countries lack medical and nursing staff trained in the haemoglobinopathies and, as result, patient care is often less than optimum. The lack of specialists is partially due to a lack of interest in haematology circles for non-malignant haematological disorders but also because these disorders are regarded as rare and, in many countries, funding for rare and chronic disorders is absent or inadequate as health policy is diverted to other health ‘priorities’. Funding: A stipend of $2000 USD/month for each successful candidate, to cover accommodation, transportation and other living expenses. Any expenses above this amount will be the responsibility of the successful candidate. In addition, the Fellowship will cover the cost of a return airfare (economy class). An additional sum of up to $500 USD per candidate will be paid to the training centre, to cover administrative costs. TIF endeavours to expand its selection of centres of expertise as training centres for the TIF-Renzo Galanello Fellowship in the future, by identifying and promoting such centres in other regions of the world, so as to facilitate the participation of a broader geographical range of candidates. While TIF magazine was in the pipeline for printing, two important events have been finalised: 1. The signing of a memorandum of understanding in China between Chinese government and state officials and Thalassaemia International Federation for the promotion of Prevention and Control policies in Southern China 2. The workshop on haemoglobin diseases and rare anaemias took place in Ferrara Italy and had a very important outcome: A plea from the experts emphasising the urgent need for a registry and specific policies to be set in European Union countries. For more information, please visit our website, our social media. More information will also be published soon in our electronic newsletter.

21 TIFMAGAZINE

Upcoming International Events Educational Workshops

EUROPLAN Conference Another EU-funded project, known as EUROPLAN, engages associations for patients with rare diseases across EU member states to work with their national health authorities. The aim is to develop action plans for these diseases by the end of 2013. In Cyprus, a national strategy for rare diseases has already been developed by the Ministry of Health. Through CARD13, Cyprus successfully gained funding for the 2013 EUROPLAN conference, supporting the transition from a strategic plan to an action plan for rare diseases in Cyprus. 10

CARD = Cyprus Alliance for Rare Disorders

CALENDAR OF EVENTS DATE

EVENT

VENUE

02-06 November 24 Regional Congress of ISBT in Asia

Kuala Lumpur, Malaysia

13-16 November

6 European Public Health Conference

Brussels, Belgium

14-15 November

EUROPLAN Cyprus

Nicosia, Cyprus

14-15 November

World Orphan Drug Congress

Geneva, Switzerland

NOVEMBER

15-16 November 1 Italian Thalassaemia Meeting for Patients and Health Professionals and 5th European Symposium on Rare Anaemias Ferrara, Italy st

18-19 November

International Seminar on Prevention and Control of Birth Defects and Thalassaemia

Guangzhou, Guangdong Province, China

19-20 November Luxembourg Europlan Conference

Luxembourg, Luxembourg

27-28 November 10 International Conference of Egyptian Society of Haematology and Research Update in Haematology

Cairo, Egypt

01-04 December 24th Regional Congress of the ISBT

Kuala Lumpur, Malaysia

03-04 December Ashgabat Conference on Non Communicable Diseases

Ashgabat, Turkmenistan

7-10 December

ASH Annual Meeting and Exposition

New Orleans, LA, USA

10 December

EMA Training Session

London, UK

11 December

PCWP Meeting with all eligible organizations

London, UK

18-19 December

2 Capacity Building Workshop in India

New Delhi, India

*These Delegation Visits & Workshops are subject to change according to local circumstances

NOVEMBER 2013 www.thalassaemia.org.cy

DECEMBER

Obituaries

Prof Renzo Galanello

Professor Parvaneh Vossough

Obituary: Prof Renzo Galanello Renzo Galanello was the able successor of Prof Antonio Cao at the Ospedale per la Microcitemie in Cagliari, Sardinia. This unit has a great tradition of clinical excellence and research, dating back many decades. Prof Galanello was a close collaborator of Prof Cao from the time when Sardinia initiated one of the first thalassaemia control programs in the world. His loss, both for the local thalassaemia services and research but also for the Italian national and global medical and research community of thalassaemia, is indeed great. Prof Galanelloâ&#x20AC;&#x2122;s contribution to research, which includes all aspects of thalassaemia but especially iron chelation and the correlation of genotypes to phenotypes, has been invaluable and the impact on our better understanding of the disorder and its prognosis is now universally acclaimed. Prof Galanello, you will be greatly missed, but indeed all you have left behind as a doctor and a person will never be forgotten. It will remain in the books, in the literature, in our minds, but very importantly, in our hearts. Obituary: Professor Parvaneh Vossough The Iranian paediatric haematology and oncology community has suffered a great loss with the death of Prof ParvanehVossough, a pioneer of modern paediatric haematology and oncology in Iran, who passed away on 19 May 2013. She studied medicine at Tehran University and completed her internship and paediatric residency at renowned medical centres in the USA. Afterwards, she moved to Washington D.C. where she completed her fellowship in paediatric haematology and oncology at Georgetown University Medical Centre. She then founded the first department for paediatric haematology and oncology in Iran at the Ali-Asghar Childrenâ&#x20AC;&#x2122;s Hospital Medical Centre. In the early 1990s, she became involved with the charitable Society to Support Children Suffering from Cancer, serving as medical chairpersonship on a voluntary basis. Under her guidance, the organisation expanded into a comprehensive paediatric cancer treatment and research centre, the MPCRTC. Prof Vossough had a unique personality, in terms of her moral values and modesty, her sense of social responsibility and her love and devotion for her patients, as well as dedication to her fellow academics and her students. May her soul rest in peace.

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Obituary: Professor Mina Izadyar The Iranian paediatric haematology and oncology community suffered a further great loss this year, when Prof Mina Izadyar, M.D., passed away at the Professor age of 63. Dr Mina Izadyar, Mina Izadyar Professor of Paediatric Haematology/Oncology in Tehran University of Iran was born in 1949 in Kerman, Iran. She studied general medicine and paediatrics at Tehran University and was a devoted, scientific-minded and distinguished paediatric haematologist-oncologist. She had a broad spectrum of interests, including research and teaching patient care. She promoted programmes to prevent beta-thalassaemia major in Iran, including premarital screening for the beta-thalassaemia trait, which was enforced by law and applied country-wide. She also established and was director of the Iranian Thalassaemia Society, which supervised and enforced the application of standard treatment protocols for patients suffering from beta-thalassaemia major throughout the country. Prof Izadyar was instrumental in ensuring that every blood transfusion centre in Iran had an adjacent, specialised clinic, providing medical care, supervision and blood transfusions. She was also a co-founder of the Iranian Paediatric Haematology-Oncology Society. Dr Izadyar was an engaged and experienced oncologist, sorely missed by her colleagues. May her soul rest in peace.

MAURITIUS The Thalassaemia Society of Mauritius, the National Blood Transfusion Service and the Blood Donors Association, in collaboration with the Municipality of Beau Bassin Rose-Hill, organised a Mega Blood Donation on 11 May 2013, to mark International

SRI LANKA The Lanka Thalassaemia Circle, which focuses on promoting the rights of patients with thalassaemia in Sri Lanka, has been officially formed under the patronage of Mrs Shiranthi Rajapakse, the First Lady of Sri Lanka. Sri Lanka is a country with many successes

Thalassaemia Day. The Thalassaemia Society, founded in 2009, focuses on raising awareness, blood safety and adequacy, patient education and empowerment and the promotion of quality of life, as well as advocating for prevention and optimum disease management with the Ministry of Health and the WHO.

in the field of thalassaemia control and its medical and patient communities have shown exemplary strength and commitment. Furthermore, a clinic was established in Kurunegala, Sri Lanka, on 19 September 2013, with the intention of collecting “cheek swabs” from thalassaemia children, which are to be sent to a Genetic Laboratory in New York, USA, for HLA testing, aiming to reach a permanent cure for Thalassaemia.

INDIA Activities for World Sickle Cell Day, celebrated on 19 June each year, were organised by the Blood Patients Protection Council (BPPC) in Calicut, India. In collaboration with the Regional Science Centre, BPPC organised an educational patient/parent meeting on sickle cell disease, which took place on 15 June 2013.

PAKISTAN Iftikhar Muhammad Chaudhary, the Honourable Chief Justice of Pakistan, received a delegation of patients with thalassaemia on the occasion of Red Letter Day, celebrated on 11 April 2013. The delegation promoted the implementation of screening prior to marriage across the country, as a measure of prevention.

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TIFMAGAZINE

Member News

Collection of “cheek swabs” in Sri Lanka

In addition, the Hamza Foundation Welfare Hospital and the Blood Transfusion Services (HFWHBTS) in Peshawar, Pakistan with the collaboration of the National Highways and Motorway Police (NH&MP) organised a blood donation camp to mark World Blood Donor Day on 14 June 2013, at the Motorway Toll Plaza (M-1), Peshawar.

Diseases Study Group (26 September 2013), the second meeting of the Haemoglobinopathy Centre of Rabat (23 November 2013), roundtable discussions with patients and parents (14 November 2012, 5 June 2013 and 11 September 2013), a screening day (15 June 2013, and TV broadcasts about thalassaemia (7 August 2013).

USA Cooley’s Anaemia Foundation launched the Council of Heroes initiative on 20 September 2013, on the occasion of their 59th anniversary. The initiative is a new investment campaign, designed to move the Cooley’s Anaemia Foundation (CAF) to a new level of activity and achievement, while working to perfect stem cell and gene therapy curative approaches. On 2 October, CAF made available to the thalassaemia community an important new publication, A Guide to Living with Thalassaemia, offering useful information to individuals in the thalassaemia community. The book is intended for both patients and caregivers.

PALESTINE An online competition about thalassaemia and the haemoglobinopathies was held in Palestine in June 2013, attracting the participation of 20,000 9th and 10th grade students from all districts.The competition aimed to educate young people about thalassaemia and other hereditary diseases, and to assess students’ knowledge.The twenty-five students with the highest scores received an award. Celebrations to mark Thalassaemia International Day took place in Nablus City on 4 May 2013.Activities included the opening of the Amal Centre for Social Services, providing services to thalassaemia patients, their families and the residents of the Blibos Area of Nablus.

MOROCCO A number of activities were launched in Morocco in 2012-13, as part of ongoing efforts to improve the care of patients with thalassaemia and other haemoglobin disorders. Prof Mohammed Khattab, Head of the Paediatric Haematology and Oncology Centre Children’s Hospital of Rabat, organised educational meetings, conferences and workshops about thalassaemia for patients and general practitioners in Rabat, Kenitra, andTetouan, including the Haemoglobin

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Patients’ Stories Josephine Bila shares her experience as a Thalassaemia major patient and survivor. I am Josephine Bila, M.S.W., a beta-thalassemia patient from New York City, in the USA. I am a trained clinical social worker, emotional wellness coach, US Food and Drug Administration patient representative for thalassaemia, and digital media expert. Back then I was going to the hospital for transfusions every single week, I was a shy and never talked about my illness. I was also afraid of dying and was highly distracted at school. Because of this, I was placed in special needs classes for getting bad grades. The winter after my 8th birthday, I got sick with the flu and was put in the hospital for several days. On the fourth day of my stay, my doctor came in to talk to my mother. I saw them talking quietly, so as he was leaving the room, I asked him, “Am I going to die?” The doctor laughed and said, “Not any time soon.” Then he continued, “Why don’t you get out of this bed and go for a little walk? You can probably go home tomorrow.” Go home tomorrow? I’m not going to die? I couldn’t believe it. My mom was happy I was well. My biggest fear was the result of my parents not wanting me to talk about having thalassaemia. My parents did their best to protect me from other people’s negativity, but didn’t realise that hiding the truth was hurting my self-esteem. I constantly felt worried and anxious. I wondered if people would still like me if they knew I needed transfusions to live. Every day, I would feel stressed and anxious about people finding out the truth. I am going to take you on a journey through my life and share three big lessons that I’ve learned along the way. None of my friends knew I was going to the doctor. I wasn’t even sure if my sister knew I was getting transfusions. All of this together made me feel horrible about myself. Of course, teachers in my school knew that I had thalassaemia because I had to miss a lot of my classes to go to doctors’ appointments. Some of my teachers were really mean to me about it. My 6th grade teacher asked me how I could possibly smile so often, yet have such a tragic life. Another teacher told me that I would never amount to anything. And in 11th grade, when it came time for my guidance counsellor to help me find a college, she said that no college would accept me, so I shouldn’t bother trying. Everyone’s negativity hurt my self-esteem. My grades suffered for a long time because I believed all

of the bad things people were saying about me. By the time I reached 11th grade, I had a 67 out of 100 grade point average. My father never paid attention to my report cards. He just kept drilling into my brain that I needed to keep trying. He’d say, “School is everything.” My dad knew school was important.As my parents pushed me to succeed in school, I started to believe in myself and slowly stopped believing the mean things teachers and kids were saying about me. In high school I was two grade levels behind in math, but I eventually began to excel in science and English. In the 12th grade, I took advanced science classes and finally met teachers who believed in me. I also became friends with some really smart kids who pushed me to work harder. I wanted to be better than I had been in the past and that made me more confident. In 12th grade my grades improved and I got onto the school’s honour roll for the first time. I kept up that momentum and received near perfect grades in both college and graduate school. What I learned is that you are the designer of your life. Other people will try to label you and make you feel like your life is worth less than theirs and that’s absolutely untrue.You have to let go of other people’s beliefs and create a bigger belief about yourself. This leads me to the first big lesson that I want to share with you.You should talk about thalassaemia. Align yourself with people who are compassionate and will understand and appreciate the things you’re going through.These people could be family members,

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nurses at your hospital, or close friends. People who know and care about you. What I didn’t realise was how incredibly freeing it is to actually stand in my truth and not hide who I am. When I finally opened up to my closest friends and asked my sister if she knew what was going on, I felt a great weight lift off my shoulders. I didn’t have to hide anymore. Of course, not everyone reacted nicely, but it didn’t matter. I gave myself permission to just be me. The more people I tell, the less I see thalassaemia as my identity. What would it feel like to never again worry about how other people think of you? Wouldn’t it be liberating?Think about that. My second lesson: Don’t take the easy way out and say you shouldn’t achieve goals because you’re just going to die anyway. Engage in activities that bring you alive and keep you intrigued. I will use Stephen Hawking as a prime example here. Stephen Hawking is known to the world as a genius who studies the universe as a cosmologist. At the age of 21, his doctors diagnosed him with a motor neuron disease and told him that he only had two years to live. Do you know how old Stephen Hawking is today? He’s 71! Do you know why he lived three years, four years, and now fifty years beyond his diagnosis? It’s because he lives with absolute passion. Mr Hawking is in love with our universe and that love fills him with enough curiosity

Hannah Hiew Pei Yuen shares her experience as a thalassaemia major patient and survivor. I’m Hannah Hiew. I’m an author, publisher and speaker, and distributor of a local magazine. My autobiography is entitled ‘Pain In An Answered Prayer’. I have been on the committee of KTHA (Ampang Hospital Thalassaemia Club) since October 2010. I have been suffering from beta-thalassaemia major for 35 years, and for 22 years I have been a diabetic (IDDM). When I was born, the doctor told my mother that I would only live to the age of 10. But as you see, today, my life has been extended for more than three decades. The only cure for regular transfusion-dependent thalassaemia major is to undergo bone marrow or cord blood transfusion, which was not possible in my case due to the incompatibility of both of my sisters’ marrow, which was tested when I was 10. Due to my family’s financial constraints, I was not well-chelated since the age of six, as Desferal was not available for

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to keep him looking forward to each new day of life. Lesson three: you will absolutely lose out on life if you listen to other people’s negativity. Are you internalising other people’s negativity or can you take it and turn it into something productive for yourself? I’m 37 and still learning how powerful I can be when I live in my truth. Living in my truth means telling people that I have thalassaemia, listening to my inner desires about achieving goals, and not allowing anyone else’s beliefs to impact my identity. I’m going to conclude with a quote from Stephen Hawking. He said, “Remember to look up at the stars and not down at your feet.Try to make sense of what you see and wonder about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up

free in the 1980s. As a result, I had iron overload in my pituitary gland, which stunted my growth and affected my organs and hormones. Having a short stature since a young age, I often got teased at school. I also developed diabetes when I was 13. At that time, my ferritin (iron level) was 6,000+ mg. I felt my whole world crashed because of the pain and inconvenience of insulin injections, the food I had to avoid and the burden of living with a disease for the rest of my life! I felt devastated, depressed and suicidal. In November 2003, I was diagnosed with cardiac haemosiderosis, a condition of swelling of the heart due to excessive iron. At that time my ferritin was 3196mg. As a result of all these complications, my emotional state was also affected. I struggled with low selfesteem, inferiority complex, self-pity, depression and poor memory due to low sugar levels. I often felt intimidated, angry, tired and frustrated living with two illnesses. I was also deprived of education because my mother didn’t grant me the permission to further my studies as she was afraid I couldn’t

The healing of a life-threatening heart condition and severe depression: How I experienced two healings in my life. Firstly, I was healed of my heart complication. In December 2003, I was diagnosed with cardiac haemsiderosis, where my heart swelled due to iron overload in my heart tissues, as a result of the many years of blood transfusions. My echogram results at UMMC in December 2003 showed my heart function rate at 41%. For three years, I suffered from swollen ankles, breathlessness and excruciating back pain. I couldn’t run to catch a bus, cycle or dance. I felt like a 60-yearold lady when I was only 26! Even after taking two types of oral medication for about two years, and despite my echogram results showing improvement, the symptoms were still apparent. On 25 December 2006, I received the best Christmas gift in my entire life when I was healed of my heart complications. I felt a difference and realized that the symptoms had disappeared! I could run, dance, cycle and climb the stairs without any difficulty. A year later, when I went for my follow-up appointment and did an echogram at the National Heart Institute (IJN) in November 2010, it showed that my heart function had improved and my echogram results were 56% - which is in the normal range. The cardiologist even told me that it wasn’t necessary for me to continue the follow up appointments at IJN, as my echogram results were satisfactory. In September 2011, I also did an MRI test for my heart and liver. The result was good as it showed no iron overload compared to the MRI that I did in January 2008. The specialist doctor, Dr Jameela in Hospital Ampang also told me that I don’t need to take the oral medicine (Cardivilol)) anymore for my heart. I was overjoyed. Second, I was also freed from a severe condition called “manic depression”. This is a condition where a person’s mood swings from overly “high” (manic) to overly “low” (depressed). Another name for manicLike our page on Facebook and share it with your friends!

depressive illness is bipolar disorder. This refers to a person’s mood alternating between “poles” of mania (highs) and depression (lows), a brain disorder that affects one’s ability to function. Abnormal thyroid function, life events and circumstances can trigger these drastic mood swings. How I overcame and managed my illnesses. a. Managing sleeping difficulties and depression: For three years, I struggled with lack of sleep as I was previously working full-time in a legal firm. Gradually, I pulled through and overcame the problem. Until today, I no longer depend on pills to help me sleep. It was also a miracle that I could work for three years in the firm as a permanent, full-time employee because in the past it was difficult for me to have permanent employment. b. Managing my ferritin levels: My doctor, who is a haematologist at HKL, put me on a combination therapy of Desferal and Ferriprox in November 2004. After consistently taking Desferal and Ferriprox for ten months, I began to see progress in my ferritin levels. My ferritin level has been maintained within safe levels of below 1000mg since 2008. My motto came to be: “Be an overcomer and not a quitter”. I knew God didn’t want me to give up living but to strive to live and fight these diseases. I never felt alone because God strengthened me to do it. Since then, I was healed from severe depression and have not been dependent on anti-anxiety pills to help me sleep since 2008. In May 2006, I wrote an autography entitled ‘Pain in an Answered Prayer,’ to use it as a tool to inspire, educate and encourage thalassaemia patients to take good care of their health. I learned that we are all created for a reason. My book is about my lifelong struggle with two major chronic illnesses, my miraculous survival and finally, how I came to terms with my ailments, overcame them and discovered my purpose in life. Having a positive attitude towards my sicknesses and others, I am no longer gripped by despair and self-pity. I remained strong and determined to take good care of my health as it is a gift from God The fact I am still living today is, I believe, a miracle.

TIF WANTS TO HEAR YOUR STORY! If you have a story that touches on some of the issues faced by thalassaemia patients and parents send it to TIF at thalassaemia@cytanet.com.cy

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take the pressure of grade 6. After grade 5, I worked and used my savings to study courses on computer and preschool education. I also had difficulty finding a permanent, full-time job. I was dismissed from several jobs due to my frequent medical leaves and unsatisfactory job performance. I felt discriminated against, but I eventually got a permanent, full-time job as an administrative and accounting assistant for three years in a legal firm.

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Neocyteor young red cell transfusion may modestly reduce blood requirements (Spanos, 1996). However, patients are exposed to a higher number of donors, with a consequent increase in cost, risk of transmission of infections, and risk of developing alloantibodies. Storage of donor red cell units The anticoagulant preservative solutions used in blood collection (see Table 2a) have been developed to prevent coagulation and to permit storage of red cells for a certain period of time. All of these solutions contain sodium citrate, citric acid and glucose, some of them may also contain adenine, guanosine and phosphate (e.g., CPD-A). When red cell concentrates are prepared, a considerable part of the glucose and adenine is removed with the plasma. If not compensated for in other ways, sufficient viability of the red cells can only be maintained if the cells are not over-concentrated. Normal CPD-adenine red cell concentrate should therefore not have a haematocrit (Hct) above 0.70 on average (CoE Re 2006). Newly developed additive solutions, however, allow maintenance of red cell viability even if more than 90% of the plasma is removed, as they contain considerably higher levels of the necessary nutrients (see Table 2b). The use of glucose and adenine is necessary for the maintenance of red blood cell post- transfusion viability, phosphate may be used to enhance glycolysis, and other substances (e.g.; mannitol, citrate) may be used to prevent in vitro haemolysis. Sodium chloride or di-sodium phosphate may be used to give the additive solution a suitable osmotic strength. Thus the introduction of additives such as AS1, AS-3, AS-5 (see Table 2b ) has permitted considerably longer storage of red cells for up to 42 days. The maximum duration of storage (expiry date) as noted on each unit varies with the type of preparation (concentration of cells, formula of anticoagulant, use of additive suspension fluid, etc) and should be determined for each type on the basis of achieving a mean 24 hours post-transfusion survival of no less than 75% of the transfused red cells. The haemoglobin oxygen release function (which is extremely important in thalassaemia major) is impaired during storage due to progressive loss of 2, 3-biphosphoglycerate (2, 3-BPG, previously known as 2, 3- diphosphoglycerate, DPG). Although, the storage time of whole blood in CPDA-1 for example is 35 days (CoE Re 2006), after 10 days of storage all 2, 3 â&#x20AC;&#x201C; BPG is lost (CoE Re2006). In the case of additives such as the ones mentioned above (see Table 2b), although storage times up to 42 days are advocated and high levels of ATP are maintained up to the 28th day of storage, 2, 3-BPG and P50 values may not be fully maintained even for this length of time. In addition, information about the red cell half- life in the recipient after prolonged storage of donor blood is limited. Taking into consideration all the above and in view of the fact that in thalassaemia major, decreased recovery and a shortened red cell half-life may increase transfusion requirements and as a consequence the rate of transfusional iron loading, the current practice is to use red cells stored in additive solutions for less than two weeks, and in CPD-A for even less days â&#x20AC;&#x201C; as fresh as possible. In patients with cardiac disease and in small children, particular attention should be paid to the increased volume resulting from additive solutions. In general, for all patients, the lower haematocrit of red cell units containing newer additive solutions should be taken into consideration when calculating the annual rate of transfusional iron loading (see Tables 2a & 2b).

Season’s Greetings

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The end of year 2013 is near, and it is time to wish you all the best season’s greetings and every progress for the New Year 2014.

A few words about Thalassaemia International Federation (TIF): TIF

Thalassaemia International Federation is an NGO founded in 1986 by a small number of patients and families representing National Thalassaemia Associations in Cyprus, Greece, UK, USA, and Italy, countries in which these diseases have been recognised as an important matter for public health and where the first programmes for prevention and management have been implemented.

MISSION and VISION

Its mission is the development of national control programmes (prevention & management) across â&#x20AC;&#x2DC;affectedâ&#x20AC;&#x2122; countries and its vision is the establishment of equal access to quality healthcare for every patient with thalassaemia across the world. Aims: TIF seeks to - Establish, educate & empower patient associations - Network with medical/health professionals, decision-makers & national health authorities, - Develop joint plans and partnerships with official health-related bodies/agencies at the national, regional & international level - Spread education, information, share experiences/knowledge amongst patients, health professionals and the community at large - Motivate and update the medical/scientific community on latest developments - Encourage and support research and clinical trials on new treatment and curative approaches.

BECOME MEMBERS OF THE THALASSAEMIA COMMUNITY Thalassaemia International Federation P.O. Box 28807, 2083 Strovolos, Cyprus Tel: +357 22 319 129 Fax: +357 22 314 552 Website: www.thalassaemia.org.cy Email: thalassaemia@cytanet.com.cy