PRESIDENT’S ADDRESS
“... This year is dedicated to the fight against health inequalities and the promotion of equal access to healthcare”
TIF President Panos Englezos Dear Friends 2010 has ended and with it a successful phase in TIF’s history of activities and existence. Over the past year, our Federation has managed to promote recognition of haemoglobin disorders by official bodies and national authorities of many affected countries and offer support to their programmes and strategies, but also to raise awareness in the global community by spreading knowledge. Now, in 2011, we move forward, monitoring progress and ensuring that our commitments are fulfilled and our promises materialised. Based on past years’ experiences, we will work in a more targeted and focused way, strengthening our networks and accelerating our efforts for collaboration with national health authorities and international dignitaries to achieve our mission. This year started with exciting events around the world. The past two months have seen the organisation by TIF of delegation visits and workshops in many countries, including Russia, Vietnam, Laos, Cambodia, Morocco, Indonesia, and Albania, aimed at raising awareness about thalassaemia and sickle cell disease. In some countries, this was TIF’s first delegation visit, and in others we reinforced our bonds of friendship and collaboration. The final preparations for the 12th International Conference on Thalassaemia and Haemoglobinopathies and the 14th TIF International Conference for Patients and Parents in May 2011 in Antalya, Turkey, are underway, and we look forward to seeing you there! Be among the first to learn about new medical advances and approaches, TIF’s new collaborations and friendships, and be present for the Board elections and the General Assembly. You can find the final programme in the centrefold, and the registration and accommodation forms on the last pages of the magazine. Many projects are successfully ending or entering a new phase, and you can read all about them in this issue. Our focus this year is on building networks of patients and medical specialists in all areas that touch upon thalassaemia, and strengthening our ties with our
members and associations globally. Moreover, we look to building new associations, starting new projects and completing new publications. You will see our efforts – and yours! – reflected in this magazine. We thank you all once again for your valuable contribution and help – we could never have done it without you. This year is dedicated to the fight against health inequalities and the promotion of equal access to healthcare. TIF has always advocated equal access to quality healthcare for every patient with thalassaemia across the world, and in 2011 we join the global cry for HEALTH EQUITY. In keeping with this year’s motto for Rare Diseases “Rare but Equal”, the World Thalassaemia Day motto is “Equal Chance to Life”. However, last year’s motto, “Knowledge is Power” remains a major objective and goal, since one could well argue that equality cannot exist without knowledge. Informed patients have control over the management of their condition, because they are aware of possibilities and options, of the existence of new treatments and drugs, but also of the results from clinical trials and new scientific findings. Informed patients cannot be easily manipulated; they know their rights. Let us work together to ensure an “Equal Chance to Life” for every patient with thalassaemia across the world. Together we can do so much – Unity is our strength! Spread the word and send us the stories of your experiences with health inequality for our next issue!
Join us in our upcoming 12th & 14th International Conferences in Antalya in May 2011 and take home new information and knowledge.
Panos Englezos TIF President
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CHIEF EDITOR’S ADDRESS
“...Our magazine is a tool which always keeps you updated on important news and developments...”
Chief Editor Dr Androulla Eleftheriou A warm welcome to all our readers. Best wishes from all of us the Thalassaemia International Federation for the start of a new, healthy and happy year 2011. Through the pages of this issue, the first of this year, you will travel with us around the world. You will escort TIF’s delegates in many countries where they organised workshops and assisted patients’ organisations in strengthening their voice and forming federations and alliances at the national level. You will follow the developments of TIF’s international projects, and revel with us in the important results produced and the new levels of collaboration achieved. You will hear about patients’ experiences and read the reports from different associations of thalassaemia patients. You will be updated on the activities of international and European health organisations, the awards in recognition of individuals’ important contributions to the field of thalassaemia, and the important upcoming events for this year.
in Antalya, will be entirely devoted to medical matters. These will include scientific abstracts and key presentations from the conference, as well as high quality articles in simple, everyday language written by international experts who collaborate closely with TIF. I hope you enjoy reading this issue of TIF Magazine. Do keep sending us your news and contributions, as well as suggestions and comments. We always look forward to hearing from you – our friends, our collaborators, our reason of existence.
Join us in our upcoming 12th & 14th International Conference in Antalya in May 2011, the greatest educational event on thalassaemia in the world! Learn about the latest advances and possibilities, gather as much knowledge as you can, and inform others. It’s in your hand!
Our magazine is a tool which always keeps you updated on important news and developments. This issue focusses on the topic of health equity, which is a major issue in this year’s policies and discussions. Our hope and wish is that, when such matters are discussed at the national or even local level, you, the informed patient and reader, can offer a knowledgeable opinion and influence the policy makers for the benefit of thalassaemia patients world wide. As you will notice, this issue does not contain a section on Medical Focus. The reason is that our next two issues, coming on the heels of the 12th International Conference on Thalassaemia and Hemoglobinopathies and the 14th TIF International Conference for Patients and Parents in May 2011
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Dr Androulla Eleftheriou Executive Director
EDITORIAL TEAM
EDITORIAL TEAM Chief Editor Androulla Eleftheriou, PhD
TIF BOARD MEMBERS Panos Englezos – President (Cyprus) Shobha Tuli - Vice President (India) George Constantinou – Secretary (non country affiliate)
Editor Chrystalla Thoma, PhD
Riyad Elbard – Treasurer (Canada) Katrina Demetriou - Assistant Treasurer (UK) Anton Skafi - Assistant Secretary (Palestine)
Contributors
Fatemeh Hashemi (Iran)
Kareem Karassery
Robert (Bob) Ficarra (USA)
Anton Skafi
Mouna Haraoui (Lebanon)
Riyad Elbard
Christina Stephanidou (Greece)
Fathieh al Dmeiry Prof Ali Taher Costin Radu Ganescu Altaee Thair
Ramli Mohd Yunus (Malaysia) Dawn Adler (non country affiliate) Michael Michael (UK) Musa Zenelaj (Albania)
Dr Michael Angastiniotis
Nailya Guliyeva (Azerbaijan)
Dr Matheos Demetriades
Gargi Pahuja (USA) Loizos Pericleous (Cyprus) Manal Safwat Shoukry (Egypt)
TIF MAGAZINE
Thalassaemia International Federation PO Box 28807, 2083 Nicosia, Cyprus Tel: +357 22319129 / 22319134 Fax: +357 22314552 E-mail: thalassaemia@cytanet.com.cy www.thalassaemia.org.cy Designed by Team Up Creations Ltd Printed in Nicosia
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.
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April 2011 6_
Board Members Corner 6_
TIF Board of Directors
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TIF Projects
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TIF Activities
16_ TIF Visits 19_
TIF International Conferences 19_
12th International Conference On Thalassaemia And Haemoglobinopathies & The 14th TIF International Conference For Patients And Parents
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Scientific Programme
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Patients and Parents Programme
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Satellite Symposia
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TABLE OF CONTENTS 26_
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News from Around the World 26_
Achievements of Thalassaemia Patients Friends Society Palestine in 2010
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“The Student As A Health Educator For His Family And Community”
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WHO Blood Transfusion Safety Programme
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Rare Disease Action Day in Canada
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Second Romanian Workshop on Thalassaemia Major
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National Thalassaemia day observed in Malabar, India
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Ninava Thalassemia Society: hard-won success for thalassaemia patients in Iraq
Featured Articles 30_
Patient’s Stories
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Tributes and Awards for Distinguished Individuals
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8th May - World Thalassaemia Day 2011
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Special Report on Health Equity
37_ Upcoming Events 37_
Events Calendar 2011
39_ Registration / Accommodation Form for the 12th International Conference on Thalassaemia and Hemoglobinopathies
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BOARD MEMBERS CORNER
“beloved friends and valued collaborators of a lifetime in our fight to ensure quality healthcare”
TIF Board of Directors In this issue of TIF Magazine, we present to you another four esteemed members of our Board of Directors – beloved friends and valued collaborators of a lifetime in our fight to ensure quality healthcare for every patient with thalassaemia across the world: Anton Skafi, Robert Ficarra, Ramli Mohd Yunus, and Michael Michael.
against the condition, both at the national and international levels, draws directly on his personal knowledge and experience. In this capacity, he is actively involved in the educational programme of his association and TIF, giving numerous presentations at conferences and workshops as an expert patient.
Anton Skafi Assistant Secretary Anton Skafi, a patient with thalassaemia himself, studied nursing at St. John Ophthalmic Hospital in Jerusalem, where he worked for 17 years, after which he held the position of operating room nurse in a private hospital. Currently, he works in a private ophthalmology clinic. Anton joined the fight against Thalassaemia in 1995 as the leader of the Thalassaemia self-help group in eastern Jerusalem. In 1996, he was invited by the Thalassaemia Patients Friends Society in Palestine to join its first Board. A year later, he was officially elected on the Board and served as a deputy chairman. He became involved in TIF's work in 2000, attending the Board meetings as an observer. Later on, he joined the Board as a delegate. In 2006, he was elected officially on the Board of TIF at the position of assistant secretary, a post he holds to this day.
As an expert patient with good knowledge about Thalassaemia, Anton’s participation in the fight
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Anton firmly believes that thalassaemia patients can be empowered through knowledge and that they should be actively involved in relevant health policy developments at the local, national and regional levels. Only by doing so can they ensure for themselves a better quality of life. We are very lucky to have Anton as a Board member and collaborator. His untiring and dedicated efforts have made a great difference in the life of thalassaemia patients.
Robert Ficarra Member Robert Ficarra is one of the most active current Members of the Board of Directors of TIF and one of its Founding Fathers.
BOARD MEMBERS CORNER He held the post of President of TIF for 8 years, and also of Cooley’s Anemia Foundation (CAF) for 12 years. Currently, he holds the position of Vice President of the International Affairs and Board Member of the CAF-USA. Son of the Founder of CAF, Robert Ficarra had many reasons to become involved in the fight against thalassaemia.
Ramli Yunus has led and joined in a number of delegation visits in Asia. His personal motto is “Help us to help others”. He has been instrumental in the promotion of effective policies and strategies for health in Malaysia, and also through his active participation in TIF’s work at the international level.
For him, the disease was not distant, but part of his life. He experienced thalassaemia’s devastating effects when two of his siblings died of the disease. Later in his life, he also adopted a child with thalassaemia. His fight for a better life for all patients with thalassaemia starts at the personal level, driving him to give his best and allowing him to feel the pain of every patient and parent in suffering. In the course of his administration of CAF as president, Robert Ficarra promoted the establishment of the Thalassaemia Action Group (TAG) – a patients support group – and the organisation of two New York Academy of Science Symposia. He has been a member of the Board of Directors of TIF for 25 years and led a great number of delegation visits on its behalf to Israel, Palestine, Jordan, Trinidad and Argentina, among others. His commitment is deep and complete, and his contribution at the national and international levels invaluable. TIF is extremely proud to count Robert Ficarra among its Board of Directors members.
Ramli Mohd Yunus Member Ramli Yunus, graduate of Human Resources and Business Management, has been a member of the Board of Directors of TIF since 2006. Married to a thalassaemia intermedia carrier, he is involved with the condition at the personal level. In the late 80s, he founded the Kedah Thalassaemia Society for parents and patients in Malaysia, before being elected as the first Secretary of the Federation of Malaysian Thalassaemia Societies (FMTS), and later, in 2000, as its President. Now a director of a private company, partner in a local restaurant and Chairman of the government state Sultanah Bahiyah Hospital Board in Alor Setar (northern Malaysia), he participates in the committee of National Prevention and Control of Thalassaemia in the Ministry of Health. He acted as co-chairman of the National Thalassaemia Seminars in this country in 2001, 2004, 2007 and 2010.
Michael Michael Member Michael lives and works in the UK and is employed by MWB Business Exchange as their technical support manager. Michael, a patient with thalassaemia himself, was the president of UK Thalassaemia society (UKTS) for 10 years, a time for which he has to show significant progress and a number of achievements.
Michael is a fighter, having stepped into policies and lobbying for the improvement of conditions for thalassaemia patients in the UK. For TIF, his critical mind and insightful recommendations are invaluable. He has led and contributed to a number of official trips and delegation visits around the world gathering data and making contacts on behalf of TIF in affected countries. Michael has recently stepped down as the President of the UKTS; however, this does not mean that he has left the fight against thalassaemia. In fact, he works harder than ever to promote thalassaemia awareness both at the national and international levels, representing the UKTS and TIF. Michael is actively involved in social work, especially in the field of community engagement. He acts in a consultative capacity to the Department of Health, UK Haemoglobinopathy Forum, healthcare commissions and the National Institute of Clinical Excellence (NICE) on policy matters.
Send us your news If you have important news you want to share with the world thalassaemia community, let us know!
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TIF PROJECTS Epidemiology Project This is an ongoing project of TIF. New features of the project include the preparation of comparative tables with information on carrier rates and annual affected births, treatment services and their quality, national prevention programmes and health/economic indicators per country. Another new feature is the preparation of global maps where the above information is represented in colour scales. The micro-mapping is intended as an essential tool for the tailoring of support to each country’s specific needs, and the colour maps constitute a new, improved visual aid. The new aspects of the project will facilitate the identification of high-risk countries in urgent need of aid, but also countries with exemplary health systems and national programmes. The description of the latter can be used so that other countries can tailor their needs and model their health care systems accordingly. Two articles are currently being drafted for publication in scientific journals – a global review of carrier rates, annual affected births, treatment and prevention, and their correlation with health expenditure and economic indicators, and a second one regarding the impact of migration on thalassaemia prevalence in each country.
ENERCA The last ENERCA conference in November 2010 in Madrid was successfully completed. Members of the Board of TIF and TIF’s Medical advisor were present. The six work packages of the project were presented and discussed, and their respective progress evaluated. TIF leads working package 5 (WP5). At this stage, it includes the development of a general protocol for the creation of guidelines, the establishment of guidelines for prenatal diagnosis, the production of educational materials for patients and families, and the analysis of questionnaires received in the survey of patients’ expectations of expert centres.
Chain of Trust This ongoing project focuses on building confidence and acceptance of telemedicine solutions amongst patients and health professionals. The official kick-off meeting for Chain of Trust took place on January 31 – February 01 in Brussels, in which TIF also participated. The project has two core
Working Packages reflecting two specific objectives: to improve available knowledge of the specific views – needs, perceptions on the added value and concerns – among patients and health professionals with regard to telehealth services (WP4), and ensuring that awareness and understanding of patient and healthcare professional perspectives on telehealth are brought to the forefront. A preliminary plan of action has been prepared and a videoclip on how to use telemedicine is now at the planning stage.
TIF’s Patient Organisations and Medical Specialists Regional Networks Work with doctors and patients for the organisation and expansion of networks within member countries and new countries is in progress. The European Network was officially launched last year at the Pan European Conference in Berlin. The Asian Network will be officially launched in the coming months, while in America, the creation of national networks is in this year’s plans, with a view to integrate them into an American Network also. In 2011 and 2012, we look to the linking of these Regional Networks into a Global Network of Patients’ Organisations and Medical Specialists in the field of haemoglobinopathies, which was the original concept and the culmination of this project.
Endocrinology, Cardiology and Liver specialists networks Over the past year, and recognising the deep need to spread multidisciplinary care for patients with thalassaemia, TIF has been working on forming two core specialists networks, a endocrinologists’ and a cardiologists’ network, respectively. Purpose of this initiative is to establish networks of collaborators, to identify specialists in the different Regions to form initially the core groups, and establish specialist educational programmes. Consequently, in each region and within each country of the region, a core group of endocrinologists and cardiologists will exist, specialists who will be fully aware of medical complications existing in thalassaemia and how to address them and be responsible to undertake the education and training of more such specialists in their country, so that multidisciplinary care for patients is provided. The first meeting of the two networks is planned to coincide with the 12th International Conference in Antalya in May 2011. TIF’s next move will be to expand and develop a third core group of liver specialists, an initiative expected to be
visit our website www.thalassaemia.org.cy TIF MAGAZINE_APRIL 2010_www.thalassaemia.org.cy
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TIF PROJECTS launched within the year.
Global Network of Nurses in haemoglobinopathies The global network for nurses was initialised in 2009 in recognition of the special role played by nurses in multidisciplinary thalassaemia care. The nurses’ network provides a platform for communication, enabling collaboration and providing education for nurses all around the world. A major deliverable of this initiative is to develop a guidelines publication for the clinical management of haemoglobinopathies specifically from the nurses’ perspective. The work on this publication is advancing with the collaboration of experienced, specialised nurses who have already joined the network. The number of participants is increasing by the day and we are very happy to see this project grow. The first meeting to discuss progress of the project took place on 12th and 13th February 2011 in Cyprus. In its course, an editing committee was formed and the structure and methodology of work was finalised. The meeting was very productive and the writing of the book is now underway.
Expert Patients Programme As was announced in the previous issue of TIF Magazine, TIF launched its ‘Expert Patient Programme’ initiative, an ongoing, challenging project which aims to encourage and empower patients from across all affected countries, through education and knowledge. The first meeting of the ‘International Core Expert Patients Group’ (ICEPG) took place in London in November 2010, a day prior to the TIF Board Meeting. During this meeting and workshop, TIF’s Secretary another and TIF Board member, coordinators of this project, presented the goals, objectives and methodology used. In addition, the first basic material drafted by TIF’s medical Advisor and TIF’s Executive Director and based on presentations of international experts who participated in TIF’s educational programmes through the years on all the above topics – was distributed to all ICEPG members. The ICEPG members had the opportunity to make their suggestions, to adopt the prepared material, and to assign medical experts to review the material. The latter is very important, as the experts need to ensure that the medical and scientific credibility of the material is valid when it is ‘transformed’ into a simpler, more comprehensible language for the patients. A timeframe for the completion of each individual step of the project was also set. Finally, it was decided that the International Conference in Antalya would
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be the venue where all the material would be completed and finalised - in time for the first training workshop for the members of the ICEPG scheduled for July 2011. The Expert patient programme aims to train and enable participants in the following capacities: 1. to manage their condition in the best way possible; 2. to discuss their condition with their physician in a competent and informed manner; and 3. to discuss and lobby with their national health authorities and government for the implementation or reformation of health policies to improve their quality of life. The programme’s main objective is to have educated patients in every corner of the world, because Knowledge is Power!
e-MSc Course This year TIF is redoubling its efforts regarding the promotion and funding of the highly significant e-MSc course, which offers professionals the opportunity to specialise in the field of haemoglobinopathies like thalassaemia from a distance through e-learning. Promotion will focus on advertising the course more widely and creating a relevant database. Funding needs to be secured from a number of sources and we aim to ensure that nine candidates will be enrolled by the end of 2011, and every year from then onwards, at least seven of which originating from low resource, highly affected countries. We need your assistance to encourage the medical specialists to integrate this valuable course in their curricula and assist us in gaining international recognition of the eMSc as a postgraduate course.
Thalassaemia Emergency Guidelines In view of the often inexistent or suboptimal knowledge about thalassaemia and other haemoglobinopathies in the emergency room, and the absence or restricted use of electronic patient records for haemoglobin disorders, there is often considerable delay and misdiagnosis of a patient’s condition with severe repercussions on the patient’s health. Several countries have begun attempts to rectify the problem. A manual with instructions is needed to avoid the delays in the emergency room and ensure the correct treatment is given. TIF has embarked on such a project, preparing a manual entitled ‘Emergency Guidelines’, in collaboration with international medical experts in thalassaemia. Our plan is to make this manual available at every emergency unit and hospital across the world, especially for cases where a patient arrives unconscious to the emergency room, unaccompanied by someone who can provide the necessary
TIF PROJECTS information about his/her condition to the attending doctors.
Brand new translations of essential TIF publications
translation is undergoing final corrections. ‘’Guidelines for the Clinical Management of Thalassaemia’’ has also been translated in more languages, including Farsi and Greek, and the translation has started in Chinese and Arabic. The set of three educational booklets (‘’About α-thalassaemia’’, ‘’About β-thalassaemia’’ and ‘’About Sickle Cell Disorders’’) and ‘’Patients’ Rights’’ have been translated into Greek and are now in the final proofreading stage.
‘’About Thalassaemia’’ has been translated and printed in a number of new languages, including Malay, Bulgarian, Romanian, German, Lao, and Nepalese. The Spanish
TIF’s cartoon ‘’All About Thalassaemia’’ finally in print! The cartoon ‘’All About Thalassaemia’’, for ages three to at least ninety-three, is a unique production of TIF and we are extremely proud of the result. The book was tested by means of a pilot study at the Junior English School Nicosia in November 2010, with the enthusiastic participation of several teachers and their pupils, and their comments were included. The cartoon explains thalassaemia in simple but correct terms for everyone, children and parents, pupils and teachers, and anyone interested in learning about thalassaemia. Requests for copies have already been made to TIF from Thalassaemia organisations and associations all around the world.
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TIF ACTIVITIES
TIF Around the world TIF Board meeting November 2010 in London On November 27–28, 2010, in London, took place TIF’s most recent Board Meeting. Many important issues for TIF, such as the global economic crisis and the difficulties and challenges for fundraising worldwide, and of course medical and other health and social concerns of patients were among the topics discussed. Iron chelation and falsified medicines constituted major subjects. The two days were packed with presentations and intense debates on the work of TIF in 2010,
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the problems, difficulties and achievements but also the way forward in 2011, and TIF’s plan of action and expectations. Important decisions were met and plans of action finalised in the course of the meeting. The Board Members were updated on all TIF activities, and left with renewed motivation for their everyday struggle to ensure quality life for thalassaemia patients in their own countries and all around the world.
TIF ACTIVITIES Visit from the First Lady of Syria November 2010 On 5th November 2010, Her Excellency Mrs Asma al-Assad, the First Lady of the Syrian Arab Republic, visited TIF in the context of an official government visit by the President of Syria to Cyprus. TIF’s President and Executive Director had already met with the First Lady in May 2009 in the course of the First Pan Middle East Conference. Thalassaemia constitutes a grave problem for Syria as well, and Her Excellency is very invested in the topic.
Accompanied by the First Lady of Cyprus, Mrs Asma al-Assad visited our offices, met with the President and the Executive Director of the Federation, and discussed issues tangent on thalassaemia and ways to support efforts for the effective control of thalassaemia in Syria. With the opportunity of this visit, Mrs Asma al-Assad was invited to join the Global Circle of Dignitaries project.
Rare Disease Day organised by the Cyprus Alliance for Rare Disorders (C.A.R.D.) with TIFʼs participation. The 28th February is Rare Disease Day. The event was first organised by EURORDIS (European Organisation for Rare Diseases) in 2008, and is now widely celebrated in Europe. Since 2009, new partners from the US, China, Australia, Taiwan and Latin America have joined in the action. This year, the spotlight was on “Rare Diseases and Health Inequalities” and the theme was “Rare but equal”. More specifically, in 2011, Rare Disease Day advocated for equal access for rare disease patients to health care and social services, to basic social rights such as health, education, employment, and housing, and to orphan drugs and treatments. In Cyprus, for the occasion, C.A.R.D. (Cyprus Alliance for
Rare Disorders) organised a press conference in the presence of the Minister of Health of Cyprus, as well as medical experts and patients/parents, and the mass media. With this event, C.A.R.D. and TIF participated along with alliances from a number of other countries in a campaign for raising awareness on rare diseases, including thalassaemia and sickle cell disease.
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TIF ACTIVITIES First Scientific Conference on Rare diseases – organised by the Cyprus Alliance for Rare Disorders In the context of the Cyprus Alliance for Rare Disorders’ strategic plan for 2011, the first national scientific conference for rare diseases was organised in Nicosia, Cyprus, on 19th and 20th March 2011. The event attracted many members of the medical and the patients/parents community of Cyprus, and benefitted from the presence of officials of the ministry of health of Cyprus, and representatives from European health organisations, such as the European Organisation for Rare Diseases (EURORDIS). The latter sent a member of its Board to give a speech on their behalf – Prof Mirando Mrsic, a haematologist with great knowledge and expertise in his own country, Croatia. The conference was very well attended and received excellent comments. We believe that the event was very successful in disseminating knowledge and spreading awareness about rare diseases in general, and thalassaemia in particular, in the country.
Blood: safe and effective transfusion through professional education The European School of Transfusion Medicine (ESTM) is a non-profit Association recognised as a non governmental organisation (NGO) under the Italian law, managed by a Council of Administration and an Executive Committee, and guided by Scientific and Advisory Committees. The aim of ESTM is to provide specialist teaching of Transfusion Medicine, of an international and European character, for already established scientific and professional specialists, physicians, and other graduates and paramedical personnel under specialist training. ESTM is the result of a series of studies and discussions on the teaching of Transfusion Medicine, originated in the Council of Europe (in 1963 and 1985) and developed (from 1990 onward) by the International Society of Blood Transfusion (ISBT) within its European Regional Congresses, and by the Italian Society of Transfusion Medicine (SIITSAICT, later SIMTI) through its "Symposia for European Cooperation". On 30th March 1992, ESTM was established in Milano through the signatures of the Constitution Act and of the Statute by twelve promoting members: the then Board members and the previous Presidents of SIMTI. The birth and the rapid growth of the ESTM are proof of the profound need for increased harmonisation of the teaching of Transfusion Medicine in Europe. So far, eighty-four courses have been organised in twenty-eight European countries, but also in Israel, Senegal, Argentina, Brazil, and Peru.
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Both events organised by the Alliance received full mass media coverage. We are happy to see thalassaemia obtain a significant position as a rare disease in Europe, where for a long time it was considered a condition restricted to immigrants and unfortunately, as such, received very little attention.
Course of the European School of Transfusion Medicine in Albania March 2011 On 16th to 20th March, 2011, ESTM organised a course on “Transfusion Medicine: development in Albania and in Europe” in Tirana (Albania). TIF’s Medical Advisor and TIF’s close collaborator Philip Chircop, high official on the Board of IFBD (International Federation of Blood Donors) participated with presentations on the role of patients’/parents’ support groups in the promotion of voluntary blood donation, the joint promotion of voluntary blood donation and awareness of screening for haemoglobinopathies: feasibility, advantages and results, and the moves towards eradication of homozygous thalassaemia in Cyprus with an analysis of the sequence of different steps to its achievement. Both TIF representatives also met with the national health authorities, government officials, but also patients/parents and medical experts, assessing the current situation of thalassaemia and SCD in Albania.
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add-0005-EU-en April 2010
TIF VISITS Thailand / November 2010 November 2010 saw the second official visit by TIF to Thailand, after TIF’s organisation of the International biennial TIF conference in Bangkok in 1999. This visit was extremely productive and informative. The delegates met with the Dean of the University of the Thalassaemia Centre in Siraraj Hospital and with medical community experts involved in the treatment of thalassaemia in Bangkok. TIF visited wards in the day care clinics where patients receive blood transfusions, and had a meeting with the patients/parents thalassaemia federation of Thailand. The delegation also met with the Minister of Health of Thailand, Mr Jurin Laksanaswit, who committed himself to providing further support and working with TIF, sharing and utilising its experience and knowledge in control strategies. Thailand has made enormous advances in prevention, genotyping, and phenotyping management of patients. TIF is committed to working with the health authorities and the medical community to further support patients’ rights and raise the quality of services to patients across the country, including the establishment of a reference centre in Bangkok.
and the second half to patients/parents. Ample interactive discussions took place, a fact which pleased us, because providing information and education constitutes one of TIF’s core activities.
Egypt / December 2010 A London and Cyprus-based travel company, Olympic Holidays, has donated an automated system for the identification of carriers of haemoglobin disorders to Egypt’s Cairo University, through the mediation of the Thalassaemia International Federation. A relatively high proportion of Egypt’s population are carriers of the severe form of beta-thalassaemia. Therefore, a screening process is required, preceded by a campaign of public awareness. Dealing with the large population in Egypt is a vast undertaking and the University of Cairo’s Paediatric Department under Professor Amal El Beshlawy and Vice Dean Prof Lobna Fawaz are to be congratulated for initiating the effort.
China / November 2010 The progress marked by China over the years has been dramatic in both the prevention and management of thalassaemia. As a close follow up on the signing of a joint plan of action between TIF and the regional Guangzhou authorities in May 2010, TIF organised this delegation visit and the first workshop in Nanning, Guangxi. TIF representatives met with health officials, and TIF reiterated its interest in the needs of patients and the support required in this part of China. The delegation received detailed information on the progress, decisions, and commitments by the Chinese government on the issue of thalassaemia, which included a detailed plan of national prevention strategies and improvement of health services provided to the patients. TIF also organised an educational workshop, the first half of which was dedicated to health professionals,
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Such large numbers require an efficient laboratory infrastructure and the Thalassaemia International Federation, a longtime ally to Egypt’s efforts to deal with the problem, has recommended automated laboratory systems. Prime movers in this effort were TIF’s President, TIF’s Executive Director, and TIF’s Secretary. Olympic Holidays, a company known for its annual donations to needy causes, generously stepped in and purchased the laboratory system (Biorad-Variant II), which was delivered to Cairo University in a solemn ceremony on Sunday 19th December 2010. The donors were repre-
TIF VISITS sented by Company Director Mr Nicos Mylonas. The instrument was accepted with thanks by the Vice President of the University, Prof Hussein Khaled, as well as the Paediatric Department heads and staff. Present at the ceremony was also Dr Faten Mofta, Director of the Blood Transfusion Banks, as representative of the Ministry of Health of Egypt, and the Head of the laboratory of the University Hospital. All expressed the belief that this is the beginning of a national programme to control thalassaemia in Egypt and all expressed gratitude to the donors.
Morocco / January 2011 As part of TIF’s monitoring of the progress achieved in the countries of the Maghreb region, a member of TIF’s staff visited Morocco between 27th and 30th January 2011. In the course of the visit, the delegate met with members of the Steering Committee and evaluated the progress of their activities, and also with the President of MATHED, the local patients’ association, for an update on the progress achieved in the establishment of a national control programme for thalassaemia in Morocco. Our delegate also saw patients and parents and discussed the ways in which TIF could assist them. In Rabat, a high level meeting was organised with Ministry of Health officials – Dr Mustapha Mahfoudi, Chief of Noncommunicable diseases, Dr Hicham El-Berri, responsible for the Thalassaemia Project, Prof Charif Chefchaouni AlMountacer, Director of all Hospitals in Rabat, and Dr Linda Alami, Director of the Children Hospital in Rabat. The issues discussed included the current situation of blood transfusion, chelation treatment and reimbursement, but also how TIF can best support national efforts in the implementation of a national thalassaemia control programme. TIF’s delegate also met with the Executive Director of the Princess Lalla Salma Foundation and, in Casablanca, with the President and members of the Haematological Medical Association as well as members of the Paediatric Society of Morocco. Both Societies expressed the wish to collaborate more closely with TIF in organising further educational events, and we are of course delighted!
Cambodia / November 2011 TIF, in collaboration with the Department of Preventative Medicines of Cambodia, co-organised a workshop forum for the discussion and exchange of ideas on the ‘Cambodian Guidelines for the clinical management of thalassaemia’, which have been based on the TIF Guidelines. After a lively, interactive discussion, the final draft of this document was adopted by the quorum. Once they are endorsed by the Ministry of Health, the Guidelines will be printed and distributed across Cambodia. TIF’s delegate met with the Director, Dr Prak Piseth Raingsey, and the Vice-director of the Department of preventative medicines to assess progress and plan future steps, including a three-year joint plan of action, a patients’ registry and pilot prevention schemes in the big cities, as a starting point. The TIF delegation also met with the Paediatric Medical Association and the Chancellor of Phnom Penh University, as well as with the local thalassaemia association to strengthen collaboration ties and offer support for thalassaemia patients across the country.
Laos / February 2011 This was TIF’s first exploratory delegation visit to assess the situation of thalassaemia and to meet with TIF collaborators in the country. The TIF delegation met with the medical community and discussed ways of educating health professionals on the prevention and control of thalassaemia,
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TIF VISITS but also with patients/parents to discuss problems and hear their suggestions. A unanimous vote was taken for the establishment of a Laos Thalassaemia Association before the end of the year. ‘About Thalassaemia’ has already been translated in Lao and is expected to be distributed to patients/parents across the country. Finally, the delegation met with the Vice Minister of Health and it was agreed that a three-year joint plan of activities should be drafted together with TIF over the next year.
Russia / February 2011
patients and parents. This was followed by a series of high level meetings with the national health authorities of the country. Goal of the delegation visit was to assess the current situation and the magnitude of the problem of thalassaemia in this country, to observe the progress that has been made since the last TIF delegation visit in 2007, and to discuss the potential draft of a joint three-year plan of action as well as the necessary steps to be taken in order to materialise it. Moreover, the TIF delegation sought to evaluate the level of public and professional awareness, and the degree of the health services’ involvement.
TIF has exerted great efforts over the past year to open a line of communication with the Russian Federation. Russia constitutes a very significant focal point in TIF’s efforts to assess the extent and status of thalassaemia and other haemoglobinopathies in the wider region of the ex Soviet Block. TIF’s goal is to establish a solid and productive network of medical experts and patients/parents in the Russian Federation. TIF had the opportunity to meet with Russian specialists and health officials, when the Medical Advisor of TIF visited Moscow on 14th and 15th February 2011 for two important events: a symposium on the prevention and clinical management of haemoglobinopathies co-organised by our Federation and the Scientific Centre for Child Health of Russia, and for the 15th Congress of paediatricians of Russia “Actual problems of paediatrics”. He gave presentations designed to present the issue of thalassaemia in all its scope to raise awareness in the medical community. In the course of the visit, TIF’s representative also met with officials and medical experts from the Russian Ministry of Health and Social Development and discussed with them the important issue of thalassaemia and haemoglobinopathies. At present, there is increased activity in the area of rare diseases in Russia. TIF was invited to participate in the Second All-Russian Conference on Rare Diseases which will take place in April 2011 in St Petersburg. The goal of the conference is the creation and promotion of national programmes for rare diseases and TIF can push for the inclusion of haemoglobinopathies on the national health agendas. TIF has already secured the participation of international experts for the event.
Indonesia / March 2011 Taking advantage of the most recent WHO/SEARO meeting and the presentation of a three-minute statement, TIF organised a follow-up delegation visit to Indonesia between the 3rd and the 6th March 2011. TIF’s delegate met with parents and patients as well as with health professionals, and delivered a message from TIF’s president. Issues discussed in the meetings included the translation into Bahasa and distribution of TIF reference material at thalassaemia centres across the country and ways to promote a national prevention programme.
Vietnam / February 2011 A Thalassaemia International Federation (TIF) delegation visited Hanoi City in Vietnam on the 11th and 12th February 2011. The delegate participated in the inauguration ceremony for the registration of the Vietnamese Thalassaemia Association, which was also attended by the Vice Minister of Health Ass. Prof. Nguyen Thi Xuyen, the Vice Minister of Labour, representatives of the Ministry of Education, prominent health professionals and hundreds of
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The delegation also met with Ministry of Health officials and discussed issues of implementation of a national prevention programme for thalassaemia and the need to establish a unified national registry. It was agreed that, based on the findings, observations and recommendations of this as well as the last visit of TIF in Indonesia, effectuated by one of TIF’s Board members, a three-year joint plan of action between TIF and the MOH should be drafted over the next months.
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NEWS FROM AROUND THE WORLD Achievements of Thalassaemia Patients Friends Society Palestine in 2010 Contributed by Anton Skafi, Thalassaemia Patients Friends Society Palestine 2010 saw a number of important activities organised by Thalassaemia Patients Friends Society Palestine (TPFS), such as the opening of the Amal Community centre whose aim is to influence national policies, to improve public awareness, and prevent new thalassaemia births. A number of meetings and lectures took place on psychosocial support for thalassaemia patients over the year and the Amal newsletter has started its circulation for the benefit of thalassaemia patients. Issues 18 and 19 have already been released.
TPFS has organised and co-organised a number of activities for thalassaemia patients in the course of the year, among them the yearly Ramadan Breakfast for the benefit of thalassaemia patients, a summer camp for thalassaemic and non thalassaemic children, a workshop about thalassaemia management, and TPFS’ third mass media educational conference on the role of mass media in supporting education and awareness on thalassaemia and the pre-marriage test.
“The Student As A Health Educator For His Family And Community” TPFS signed a memorandum of understanding with the Palestinian Ministry of high education to raise health awareness about thalassaemia at schools. The goal is to fight Thalassaemia and raise awareness at 56 targeted government schools, through a daily educational programme followed up by a government officer. This will surely be an opportunity to strengthen the friendship between students with thalassaemia and other blood disorders and other students, and promote empathy for the patients’ suffering, including everybody in the fight against this disease.
WHO Blood Transfusion Safety Programme (WHO/BTS) and WHO Global Safety Network in Dubai, United Arab Emirates The 63rd World Health Assembly (May 2010) adopted the resolution WHA A63.12 on the 'Availability, safety and quality of blood products' and thereby also requested from the Director-General of the WHO "to provide guidance, training and support to Member States on safe and rational use of blood products .. and patient blood management". To implement this resolution, the WHO Blood Transfusion Safety Programme (WHO/BTS), in collaboration with Sharjah Blood Transfusion and Research Centre and the Government of United Arab Emirates (UAE), organised the WHO Global Forum for Blood Safety: Patient Blood Management on 14th and 15th March, 2011, in Dubai, United Arab Emirates. The aim of this forum was to provide a mechanism for information exchange, fostering collaboration, involving international partners in the implementation of resolution WHA63.R12
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on availability, safety and quality of blood products, particularly on patient blood management system. Furthermore, on 16th to 18th March 2011, a meeting of the WHO Global Safety Network has taken place, consisting of WHO Collaborating Centres and selected Experts Panel Members and NGOs in official relations with the WHO. The aim was to provide a mechanism for engaging and strengthening the interaction of such centres and NGOs, and to coordinate WHO global/regional activities and offer support to priority countries for blood safety. The Global Blood Safety Network (GLBS) has also created a new Working Party on Global Blood Safety, which was approved by the International Society for Blood Transfusion (ISBT).
NEWS FROM AROUND THE WORLD Rare Disease Action Day in Canada Contributed by Riyad Elbard, TIF Board member and President of the Thalassaemia Foundation of Canada On September 30th, 2010, more than fifty delegates from across Canada gathered in Ottawa and spoke with one strong voice, advocating for health policy on behalf of 2.7 million patients affected by rare conditions under the umbrella of Canadian Organisation for Rare Disorders (CORD). The patient advocates met with Members of the Canadian Parliament and Senators from all political spectrums. The delegates asked MPs and Senators to support CORD by urging the Canadian Government to move forward quickly on a regulatory framework for rare disorders and to work with the Provincial and Territorial Governments on a national plan for rare diseases.
On October 1st-2nd, 2010, CORD hosted its third annual conference in Ottawa.
The event was attended by more than 150 participants from patient organisations, government representatives, patient advocacy agencies, and the pharmaceutical industry.
participants on advocacy, capacity building and strengthening a patient organisation. TIF Board member and President of the Thalassaemia Foundation of Canada, Riyad Elbard, spoke to the participants on the importance and the benefits of belonging to an international rare disorder organisation.
The discussions and presentations focused on a proposed national plan for rare disorders, a dialogue on challenges in addressing rare disorders, Canadian initiatives for research and early detection, and initiatives toward access to diagnosis and treatment. The conference also included four workshop sessions designed to educate
Second Romanian Workshop on Thalassaemia Major Contributed by Costin Radu Ganescu, President of Romania Association of Major Thalassaemia
On the 30th October 2010, the Romania Association of Major Thalassaemia (APTM) organised for the second consecutive year the National Workshop on Thalassaemia Major with TIF’s support. The event brought
together professionals, patients and parents, representatives of patients’ associations from other European countries, and representatives of the press. The event combined successfully the medical experience in clinical management and treatment of major thalassaemia with the personal experience in the management of the disease, the experience of patients and of other patients’ associations.
thalassaemia major, liver complications and possibilities of treatment, hypogonadism, fertility and other endocrine complications in thalassaemia major, as well as diabetes and the importance of the glucose test. The second part of the workshop was reserved for presentations from patients focussing on personal experience and the work of patients’ associations in a number of European countries.
The first part of the workshop was given over to the medical experts and the topics covered the clinical management of major thalassaemia and chelation therapy, cardiac complications in
We are delighted and impressed with the success of the event, and congratulate the Romania Association Of Major Thalassaemia on its organisation.
Interested in joining TIF’s Global Specialist Nurses Network? Please write to us and complete the relevant form to send you more information. TIF MAGAZINE_APRIL 2011_www.thalassaemia.org.cy
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NEWS FROM AROUND THE WORLD National Thalassaemia Day observed in Malabar, India Contributed by Kareem Karassery Gen. Convener; Blood Patients’ Protection Council, Kerala On the 14th November 2010, National Thalassaemia day was observed at Kozhikkode (Calicut) together with World Diabetes Day and Children Day, under the auspices of Malabar THAS Society at Port Land hospital, Kozhikkode. The Deputy Mayor of Kozhikkode inaugurated the event as well as the new headquarters of the Society. The Head of the Department of Pediatrics gave the key note address, the President of the Society chaired the meeting, and the secretary of Malabar
of this event with the participation of experts from the paediatric endocrinology clinic MCH, Kozhikkode. A separate psychological counselling session was also conducted. Free Hepatitis-B vaccination was provided to the three hundred or so patients and parents who participated.
THAS Society welcomed everyone to the gathering. An endocrinology medical camp and blood and oncology check up were organised in the context
Thalassaemic children commemorated those who passed away with gifts of roses. The event was successful and the patients left with a lighter heart.
Ninava Thalassemia Society: hard-won success for thalassaemia patients in Iraq Contributed by Altaee Thair, Ninava Thalassaemia Society chairman On the 9th December, 2010, Ninava Thalassaemia Society in cooperation with the health authorities of Ninavah organised the first conference on thalassaemia prevention in Mosul city. The program of thalassaemia prevention has been launched successfully, and the 12th November set as the national day of thalassaemia prevention. Ninava Society has shown great dedication
and zeal in putting thalassaemia on the national health agenda of their country, and we have been following their efforts closely for years. Therefore we would like to state that we are delighted with these developments and wish to congratulate the Society once again on their hard work and impressive results.
INTERESTED IN JOINING THE REGIONAL (EUROPEAN, ASIAN, AMERICAN, ME, GLOBAL) NETWORK OF PATIENTS’ ORGANISATIONS AND MEDICAL SPECIALISTS IN HAEMOGLOBIN DISORDERS? BENEFITS FROM BEING PART OF THE NETWORK INCLUDE: Priority to attend meetings and conferences • Priority in sponsorship programmes • Reduced registration fees •
• Authorship/contribution to educational material • Being part of the faculty in educational events • Participation in high-level meetings of TIF
To find out how to join, visit our website: www.thalassaemia.org.cy 28_
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FEATURE ARTICLES Patients’ Stories A glimmer of hope Contributed by Fathieh al Dmeiry, Thalassaemia Friends Society Palestine Between pain and hope, reality and dreams, my pen is used to writing many words and stories. My faith was to be one of those important topics that my pen writes about, so that I tell you of some of the events and moments that I experienced in my life with thalassaemia.
problems, as there is no space for negligence under these conditions. To be able to enjoy a beautiful life, and avoid a permanent stay at medical centres, I can never neglect my treatment; I must comply with transfusion appointments, and not delay them, as to keep a good level of haemoglobin. I can also never neglect
medical problems, is to keep a high morale. The most important part of my treatment is my love for life, and I wish to enjoy my life as much as possible, as a normal person. Staying in medical centres is not the solution. The correct treatment for people like me is through a smile – a smile that overcomes the ever-present pain – and facing the difficulties of the disease with a strong will.
Fathieh Abd al Fattah Dmeiri; that is my name. Palestinian in nationality, I live in Tulkarem Camp, and I am In a community like mine, as a 20 years old. I study electric “between pain, difficulties, and thalassaemia patient, I face more engineering. I was born difficult conditions than the suffering from a hereditary suffering, there is always a disease itself, as many people disease called thalassaemia, and glimmer of hope” look at me with pity, judge me I have developed many of the for staying in bed, and label me complications that it causes. The disease succeeded in affecting other my chelation treatment, which I take 5- as disabled and useless. In doing so, parts of my body and in addition 6 times weekly, to get rid of the excess they deprive me from my ability to caused diabetes. That is the nature of iron that is accumulated in my body, contribute to my community. This this disease, and that is how it affects due to the repeated transfusions. In negative outlook does not stop or other patients as well – and doing so, I avoid any complications that discourage me, because I confront it unfortunately this is only the tip of the accompany iron overload. It is also with resolve and determination, I prove iceberg. necessary to do periodic tests and myself and my capabilities, and fulfil examinations to ensure the health of my ambitions. I have succeeded in Often I describe this disease as a beast other vital organs of my body. As it is gathering around me a group of people that charges on its prey, and leaves in often said, “prevention is better than that appreciate me and I forced the its wake pain and death. That is what the cure”. As a treatment strategy, I community to hear my clear voice thalassaemia does to me: it weakens never forget to take the medicines saying that I have a strong willpower my body and wears me out, until it prescribed by my physicians, such as and a subtle smile that not many gets me to the hospital. Under these diabetes treatment and vitamins, as healthy people have. conditions and with this disease many well as to avoid foods that are rich in Last but not least, as I always say, wonder how I cope and live with iron and can raise sugar in the blood. “between pain, difficulties, and thalassaemia. My reply is always clear: being a thalassaemic, and suffering According to my theory, in which I suffering, there is always a glimmer of from diabetes, I need to be careful, but believe very much, what I need to live a hope”. I have the capability to adapt to these full life, and to accommodate my
TIF Wants to Hear Your Story! If you have a story that touches on some of the issues faced by thalassaemia patients in their lives, send it to TIF.
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Or if you know of an inspirational or influential individual in the thalassaemia community, whom you think TIF should interview, let us know about it. We always welcome suggestions and will contact you if your story is selected for publication.
FEATURE ARTICLES Tributes and Awards for Distinguished Individuals Tribute to Vincenzo de Sanctis, Father of Endocrinology in Thalassaemia, on the event of his retirement Contributed by Dr Michael Angastiniotis, TIF Medical Advisor
Over the years of its existence, the Thalassaemia International Federation (TIF) has had the honour of knowing not one but two great physicians from Ferrara. The former was the late Prof Calogero Vullo (whose obituary you read in the last issue of TIF Magazine), and the latter his successor, Vincenzo de Sanctis. The influence of both these paediatricians goes far beyond the borders of Ferrara, or even Italy, and reaches every patient with thalassaemia across the world.
The thalassaemia world will remember Vincenzo de Sanctis as the father of the science of endocrinology in the field of thalassaemia. His retirement from the Archispedale Santa Anna comes after forty years of devoted service. He fell in love with the paediatric department of this hospital soon after his graduation from the University of Bologna in 1970. During his military service at the barracks of the Follo di Ferrara, he began to visit the department in his free time, and from that time onwards he never left.
TIF, of a supplement on thalassaemia in Paediatric Endocrinology Reviews on the same subject. These are but a few of the fruits of a longstanding relationship, which also has the character of a personal friendship. Vincenzo de Sanctis is a wise counsellor to all of us at TIF office and to the members of TIF’s Board of Directors. We are certain that Vincenzo de Sanctis has left an indelible mark at the Santa Anna Hospital, and the thalassaemia world. His influence in his field is still growing and his expertise sought by the medical community. For the Thalassaemia International Federation, this is not a ‘goodbye’ note, but a plea to Vincenzo de Sanctis to intensify our friendship and collaboration now that he is freed from some of his duties. We would like to congratulate him for completing so successfully a part of his career, and invite and urge him to continue benefitting thalassaemia with his experience, expertise and wisdom.
Thalassaemia drew him from his early days as a doctor, as it is obvious from looking at his first publications in 1980, which were concerned with the endocrine complications of the disease (hypogonadism, pancreatic function and growth). Through the years, he continued with research and many publications in this and other tangent topics. In 1984, he became a research fellow at the haematology department of the Whittington Hospital in London. As a result, he had a long and fruitful collaboration with Dr Beatrix Wonke, producing many publications over a period of twenty years. His close association with the Thalassaemia International Federation has been long and fruitful. Vincenzo de Sanctis has been a regular lecturer in workshops and conferences organised by the Federation, and was in charge of a TIF investigation into endocrine complications in thalassaemia, which covered twenty-nine centres, treating a total of over three thousand patients across the world (a study published in 2004). He is author of the endocrinology chapter of the Guidelines for the clinical Management of Thalassaemia published by TIF in 2008. He is editor, in collaboration with
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FEATURE ARTICLES Award for a distinguished member of the Board of TIF Former First Lady of Lebanon, Mrs Mouna Haraoui, receives award for her contribution to health care Contributed by Prof Ali Taher, American University of Beirut The 4th Regional Meeting of the Lebanese Society of Hematology and Blood Transfusion, headed by Prof Ali Taher, took place from the 30th September to the 2nd October, 2010. The three-day meeting revisited recent advances in the field of hematology and blood transfusion as presented by key international speakers.
become an important shelter for diabetic and thalassaemic patients and their families. Mrs. Haraoui’s dedication has helped the Centre become a frontrunner in research and innovation in the medical field, and she remains the driving force behind the Centre’s significant role in thalassaemia prevention in Lebanon, where new
cases of thalassaemia have dropped from fifty to five per year. Her care for those in need and her persistence in achieving excellence mark her as an exceptional individual and the international thalassaemia community is grateful for her efforts.
In the course of the meeting, the Lebanese Former First Lady, Mrs Mouna Haraoui, member of TIF’s Board of Directors, was honored with an award for her immense contribution to health care in Lebanon. Mrs Haraoui’s devotion to Lebanese patients and to her mission of improving their quality of life remains unrivaled. Her highly significant contribution has resulted in the Chronic Care Centre, which has
Join the Thalassaemia Family – Become a TIF Member! Is your thalassaemia association already a member of TIF? If not, it should be! TIF’s Members are part of a global family of patients, parents and medical professionals, and can enjoy many useful benefits.
Please take a moment to consider becoming a member. Each and every contribution is an invaluable expression of support for the Federation, and allows us to continue our work for the benefit of patients with thalassaemia across the world.
All members receive TIF’s publications free of charge and can participate andcontribute to its activities, particularly its internationally recognised educational programme. After one year, General Members are eligible to become Voting Members and contribute to TIF’s global policy.
For more details about the benefits of being a General or Associate Member, contact TIF at:
Non-thalassaemia related patients and other organisations, as well as health professionals and other individuals interested in supporting the cause of thalassaemia can become Associate Members.
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Thalassaemia International Federation PO Box 28807, 2083 Nicosia, Cyprus Tel: +357 22 319 129 Fax: +357 22 314 552 or by email at: thalassaemia@cytanet.com.cy
FEATURE ARTICLES
8th May - World Thalassaemia Day 2011 Combatting health inequalities: ‘’EQUAL CHANCE TO LIFE’’
“Men are born equal, but they are also born different” Erich Fromm (1900-1980) This year’s theme for the 8th May is two-fold. On the one hand, it focuses on health inequalities stemming from social divides, poverty and discrimination which indirectly cause disease. On the other hand, it touches upon the social and health inequalities brought on by chronic and also rare diseases. In keeping with this year’s Rare Disease Day theme (‘Rare but Equal’), and the focus on Health Equity, World Thalassaemia Day 2011 deals with inequality as experienced by thalassaemia patients and their families. Social and financial inequalities go hand in hand with lack of basic awareness and prevention programmes for thalassaemia. Dire working and living conditions are linked to lack of treatment from a young age, thus causing problems in later life. The high cost of treatment, when not reimbursed by the State, and problems of integration deepen the social divide, affecting the psychology of patients and families, leading to isolation and depression. Patients are the victims of inequality in more ways than other people. Patients struggle each day to overcome the obstacles to quality healthcare and good quality of life, to which they have every right as patients and human beings.
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Building on last year’s theme, Knowledge is Power and the informed patient, this year we take a step further and declare for all to hear that thalassaemia patients deserve an equal chance to happiness and life.
The idea of the 2011 slogan – “Equal Chance to Life” – is to encourage thalassaemia patients worldwide to fight for their basic human rights and their rights as patients, for their voice to be heard, and their struggle to be acknowledged by their governments. 2011 must be a year of positive changes, of empowerment and gaining new ground for every patient with thalassaemia across the world. We look forward to hearing about how you – our members – reflect this important theme in your 8th May activities, and to reading your stories of how you have struggled with inequality in your life.
FEATURE ARTICLES Special Report on Health Equity Health Inequalities in Europe and the World “There is no greater inequality than treating people in unequal situations in the same manner,” recently stated Yann Le Cam, CEO of Eurordis, the European Organisation for Rare Diseases. We all have the same human rights and are born equal to each other. However, some of us are born in unequal circumstances, either due to socioeconomic conditions or disease, and this is something we cannot forget when we talk about equality. Equality therefore is not a simple affair of giving everyone the same access to treatment and work opportunities, education and financial stability – though these are certainly paramount factors in ensuring quality of life for all. Some people, foremost patients with chronic and rare diseases, must tackle more inequalities and obstacles than the rest. Therefore, special provisions must be made for them. Socioeconomic inequity has been shown to indirectly cause many non communicable chronic diseases, through deprived living conditions, bad habits, lack of education and awareness, and lack of financial stability and good healthcare. Certain groups of people are hit the hardest, such as ethnic minorities and migrants, children, women, the elderly, the homeless and the unemployed, and of course people who live with disease and disability. Segregation, racism / sexism, and social inequality within a country and across borders are therefore indirect but powerful causes of physical suffering and even death. Patients with chronic and rare diseases often suffer from debilitating incapacitations and differences which set them even further apart. Their health condition renders existing inequalities more severe, as the cost of
‘’Equality therefore is not a simple affair of giving everyone the same access to treatment and work opportunities, education and financial stability’’ diagnosis, treatment, psychological support and medicines can become overwhelming, and therapy demands a flexible and reduced work schedule. Europe, North America (USA and Canada), Australia, certain countries in the near East, and Japan, have such an economic stability and health infrastructure that health inequalities are often thought to exist only in poor regions of Africa, Asia and Central and South America. However, even the
wealthiest regions suffer from inequalities. In 2009, the European Commission passed a Communication (COM(2009) 567) to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the regions entitled “Solidarity in Health: reducing health inequalities in the EU”. The Communication set out the problem, and defined equity in health as a fundamental value and as an objective for the public health challenges
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FEATURE ARTICLES identified in the EU Sustainable Development Strategy. The Communication called for collaboration between States, and established the following key issues to be addressed: equitable distribution of health as part of overall social and economic development, improvement of data and knowledge base and mechanisms for measuring, monitoring, evaluation and reporting, building commitment across society, meeting the needs of vulnerable groups, and developing the contribution of EU policies.
report on “Reducing Health Inequalities in the EU” was presented on 29th November 2010 at the ENVI (Environment, Public Health and Food Safety) Committee. The fact remains that Europe, considered one of the wealthiest regions of the world, has 17% of its population (about eighty million) living below the poverty threshold. The picture emerging from other regions of the world is of course much bleaker and considerable work needs to be done and similar steps be taken as in Europe to redress the problem.
In spite of the earlier identification of grave issues of inequality in Europe, the economic crisis of the last year was an eye opener, and served as a trigger for several studies on poverty and health in Europe as in other wealthy regions of the world. With 2010 declared “European Year against Poverty and Social Exclusion”, Europe rediscovered its socioeconomic outcasts and the effects poverty and discrimination have on the spread of non communicable, chronic diseases.
Europe is trying to address the issue through the creation of the above mentioned Platform against Poverty which will coordinate the actions of member states, support collaboration, and provide EU-wide rules and funding. An annual convention will allow exchange of ideas, feedback, and progress evaluation. In a very concrete statement, the EU is proposing to lift twenty million people out of poverty and social exclusion by 2020. Although this is an ambitious goal, once set against the fond of the eighty million poor in the EU, it just does not seem enough. For Europe, this is still an unacceptable situation.
A European Platform against Poverty is in the works and will form crucial part of the EU’s 2020 strategy. A draft
In regions with less resources and more people living below the poverty threshold, inequality is present in a different way than in the wealthier nations. Inequality for patients there is much more likely to lead to ostracism, extremely harsh living conditions, and early death. Treatment is often scarce or completely unavailable, whereas in wealthier nations it may be existent but not adequate. In rich countries, inequality refers more to the disparities in the quality of available treatment and to the privileged access of the few to a much better care. The fact is that extreme inequalities and disparities in health and quality of life are common in all countries of the world, poor or wealthy. It is not the wealthiest countries that have the healthiest citizens, but the ones where wealth is more evenly distributed. For more information on health equity see EPHA’s (European Public Health Alliance) website: www.epha.org/a/4368 Let us work together to combat health inequalities around the world!
TIF’s educational books available in new languages! For downloadable PDF versions of all available languages please visit TIF’s website: www.thalassaemia.org.cy Or contact TIF, your national thalassaemia association or your country’s TIF Board Member to order a hard copy.
They are absolutely free for patients and parents!
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UPCOMING EVENTS EVENTS CALENDAR 2011 EVENT
VENUE
DATE
WHO Global Forum for Blood Safety: patient blood management
Dubai, AE
March 14-15 2011
WHO Global Blood Safety network meeting (network of WHO collaborating centres)
Dubai, AE
March 16-18 2011
European School of Transfusion Medicine (ESTM) course in Tirana on “Transfusion Medicine: development in Albania and in Europe”
Tirana, Albania
March 16-19 2011
Cyprus Alliance of Rare Diseases (C.A.R.D.) Conference. Rare Diseases Conference in Cyprus
Nicosia, Cyprus
March 19-20 2011
ENERCA -Training course on haemoglobin disorders: laboratory diagnosis and clinical management
Brussels, Belgium
April 1-2 2011
6th Congress of Sickle Cell at the European Parliament
Strasbourg, France
April 12-15 2011
12th International Conference on Thalassaemia and the Haemoglobinopathies / 14th TIF International Conference for Patients and Parents
Antalya, Turkey
May 11-14 2011
6th International INTERCEPT Meeting - CERUS
Portoroz, Slovenie
May 18-20 2011
IPFA/PEI Workshop on “Surveillance and Screening of blood borne pathogens”
Dublin, Ireland
May 24-25 2011
16th Congress of the European Hematology Association (EHA)
London, England
June 9, 2011
ISBT Regional Congress – DOMAINE Promotion of Manual and Training Programme
Lisbon, Portugal
June 18-22, 2011
5th Europaediatrics Congress
Vienna, Austria
June 23-26, 2011
TIF Workshop (pre-conference) in Philippines
Manila, Philippines
September 4-7, 2011
TIF MAGAZINE_APRIL 2011_www.thalassaemia.org.cy
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MSc COURSE IN HAEMOGLOBINOPATHY Make a difference in your professional life and in the lives of people affected by haemoglobin disorders! A new e-Msc course launched in 2009 by University College London (UCL) and TIF. UCL is one of the most prestigious universities in the world and one of the few to have the necessary infrastructure and expertise to teach through e-learning. This course represents a unique opportunity for health professionals to specialise in haemoglobinopathies online with minimum disruption to professional and personal lives. For further information, please visit www.instituteforwomenshealth.ucl.ac.uk or www.thalassaemia.org.cy/msc.html or contact TIF or UCL:
It is designed to meet the needs of a wide range of medical professionals, including : • medical graduates interested in haemoglobinopathy (general physicians, specialists such as paediatricians, haematologists, clinical geneticists, obstetricians/ gynaecologists, behavioural scientists)
• other healthcare professionals interested in haemoglobinopathy (counsellors, clinical psychologists, nurse specialists and midwives) SUPPORTED BY:
• science graduates interested in medical research related to haemoglobinopathy and genetics
UNIVERSITY COLLEGE LONDON “MSc in Haemoglobinopathy” 88-96 Chenies Mews London WC1E 6HX, United Kingdom Tel: +44 (0)20 7679 6060 Fax: +44 (0)20 7380 9984 Email: Sc_haemoglobinopathy@ucl.ac.uk
THALASSAEMIA INTERNATIONAL FEDERATION “MSc in Haemoglobinopathy” 31 Ifigenias Str., 2007 Strovolos, Cyprus Tel: +357 22 319 129 Fax: +357 22 314 552 Email: thalassaemia@cytanet.com.cy
Submitting photos to TIF Magazine We are always pleased to receive your contributions and especially photos. However, sometimes photos are too small or very low-resolution and we cannot use them. To make sure your photos are print-quality, please follow these guidelines when submitting photos: 1. Photographs intended for publication in TIF Magazine should be in JPEG or TIF format 2. To be “of printable quality” means: • High-resolution (ideally 300 dpi or more). Please select a high resolution on your camera. (How this is done depends on the camera model. You can ask a camera shop for advice.) • Send the original image file (even if large). Please do not re-size the photos. • Send photos separately by email, via YouSendIt or on a CD. Please do not insert photographs into word or PDF documents.
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3. All photos should have captions – i.e. a short text explaining what is happening the photo and who the people featured in the photo are. 4. It is the responsibility of the person submitting photos to ensure that any person(s) featured in them have given their permission to publish the photo. Please make sure any patients, parents or other private persons featured in your photos have agreed to their publication. Because of the technical nature of some of these guidelines, we recommend that any person entrusted with taking photos at official events checks with a professional (e.g. a photographer or a camera shop assistant) how to adjust their camera’s settings. Thank you for following these guidelines!