TIF Magazine - issue 64 by Thalassaemia International Federation (TIF)

TIFMAGAZINE ΜΑΥ 2014

Issue 64

Published by the Thalassaemia International Federation

www.thalassaemia.org.cy

International Thalassaemia Day ‘Economic Recession: Observe - Join Forces - Safeguard Health’ 2014 key activity: 4th Pan-European Conference on Haemoglobinopathies and Rare Anaemias, Athens, 07-09 November 2014

Dear Readers,

JOIN US! Regional Conferences Many healthcare challenges are specific to individual countries, however due to the great variety of health systems and differences in the quality of health services, many regions of the world with similar cultural, religious and linguistic features share certain common problems in the management and prevention of haemoglobin disorders. In recognition of this fact TIF has embarked on the organisation of regional conferences, which focus on the specific needs of each region of the world, as well as the particular challenges faced by each country within a region. Each regional conference constitutes a unique forum of knowledge and experience that takes into account the strengths, weaknesses, difficulties and challenges that are common across many countries of a region, while at the same time and building on regional success stories, enabling interested stakeholders to streamline and tailor their work and activities.

For more information, email us at thalassaemia@cytanet.com.cy

ΜΑΥ 2014 www.thalassaemia.org.cy

In this issue of our magazine you will find rich and enhanced content, both for TIF’s international activities and participation in European, regional, and national events, as well as all the recent developments of TIF’s internationally recognised Educational Programme. This issue, number 64, also aims to provide information on important upcoming activities and initiatives of the Federation for 2014 - especially regarding the activities of the 21st International Thalassaemia Day and the 4th PanEuropean Conference on Haemoglobinopathies and Rare Anaemias, which is to be held in Athens, Greece, on 7-9 November 2014, and is promising to be a unique conference. The involvement of TIF in the international scene grows stronger year by year with the intensification of its partnerships and fruitful collaborations with official regulatory bodies, health and disease related organisations, medical communities, and patient and medical specialist networks, in an effort to strengthen the voice of patients in policy-making procedures, to promote research and education and to participate in a multitude of joint projects in the cause of thalassaemia and the haemoglobinopathies. TIF maintains a close relationship with the World Health Organisation (WHO), particularly with the headquarters and regional offices, actively providing the patient perspective on a number of issues concerning the haemoglobinopathies. TIF has also worked diligently to strengthen relations with the Secretariat of the Association of South East Asian Nations (ASEAN) and with the Ministries of Health of the ASEAN member states, particularly in the context of organising a side-meeting in parallel to the 12th ASEAN Health Ministers’ Meeting that is scheduled to be held in Hanoi, Vietnam, in September 2014. Additionally, TIF continues to strengthen its collaboration with the European Liver Patients’ Association (ELPA), World Hepatitis Alliance (WHA) and European Association for the Study of Liver (EASL) with a view to promote the prevention and treatment of Hepatitis B and C in thalassaemia populations. Indeed, TIF participated in the International Liver Congress that took place on

9-13 April 2014 in London. The Congress, which is organised annually by the European Association for the Study of Liver (EASL), provided a unique platform for specialists to debate, discuss and analyse the latest developments in the clinical management of liver disease. Furthermore, TIF, in the context of its scientifically-based Educational Programme, enjoys a strong partnership with the European Haematology Association (EHA) - demonstrated particularly by its participation in the Organising Committee of the Patient Advocacy Session of the 19th Annual Congress of the European Haematology Association (EHA), to be held from 12 - 15 June 2014 in Milan, Italy. This Congress hosts over 5,000 haematologists every year and provides the perfect location for the launching, this June, of TIF’s new publication ‘Guidelines for the Clinical Management of Transfusion Dependent Thalassaemias - 3rd Edition’. Within the following pages you will also read about TIF’s impressive plans for this year’s International Thalassaemia Day, which include the provision of a ‘8th of May’ toolkit, available to our members to use for their activities on this Day. Furthermore, TIF has scheduled a number of awareness raising activities at schools, drawing and photography competitions, a press conference, and much more. With the theme for the 2014 International Thalassaemia Day on May 8 ‘Economic Recession: Observe - Join Forces - Safeguard Health’, we move forward to achieve our goals for access to quality treatment and optimal quality of life for patients. The global crisis that we are experiencing today is not only economic, but also extends to a crisis of institutions and values. However, besides national, regional, and international official services and health institutions, patients, each separately, and all together, have a very important role to play - to support, collaborate and act in solidarity, because the driving forces of any state are healthy and productive citizens. For TIF, the 8th of May is a day of remembrance and awareness - a day of recommitment to patients everywhere, dedicated to patients’ vested rights - a day of promise for a better tomorrow - a day to unite the voice of all patients and partners, to create a strong wall to prevent further inequalities

ΜΑΥ 2014 www.thalassaemia.org.cy

TIFMAGAZINE

Foreword from the TIF President and Executive Director

Panos Englezos President

Dr. Androulla Eleftheriou

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Contents Chief Editor: Dr. Androulla Eleftheriou TIF Editorial Team: Liana Prastiti Lily Cannon Design and Layout: Design for Life Ltd - CY Editing Demetris Lambrou Printing: Cassoulides Masterprinters ISSN:1450-3093

of health both between and within countries, to face the threats brought upon us by the economic crisis. In the field of thalassaemia, a disease with a multidisciplinary approach, efforts continue for a patient oriented healthcare system, for the safety and sufficiency of blood, for the rehabilitation of patients with thalassaemia. The countdown has begun for the 4th PanEuropean Conference on Haemoglobinopathies and Rare Anaemias, organised by TIF in collaboration with the Greek Thalassaemia Federation (EOTHA) and is scheduled to be held in Athens, Greece, on 7-9 November 2014. It promises to be one of the best conferences, both in terms of its programme, but also its organisation as a whole. Participants will have the opportunity to enjoy an impressive programme which will cover all aspects related to the prevention and treatment of haemoglobinopathies and rare anaemias and discover all the latest developments related to these disorders across Europe. On behalf of the Board of Directors, we extend our warm invitation to the thalassaemia community of doctors, patients, and those who have pioneered in the field of haemoglobinopathies, to participate in this Conference.

TIF remains close to the global family of patients worldwide, and restates its commitment to join forces with each National Thalassaemia Association in every country of the world, but also to work constructively as a valuable partner in order to preserve and safeguard the rights of patients, especially those with chronic and rare diseases. The establishment of equal access to quality health services remains the vision of parents and patients, the founders of TIF, but also the patients’ associations in 62 countries - members of TIF. We wish every success, through this issue in all your endeavours for the maintenance and promotion of patients’ rights that the years of struggle have managed to acquire.

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 Mouna Haraoui Nailya Guliyeva Ramli Mohd Yunus Robert (Bob) Ficarra Saeed Jafaar Al-Awadhi

Foreword

TIF Activities Around The World

International Collaborations

Fostering a strengthened collaboration with the WHO

International Thalassaemia Day! Join Us! March with us on the 8th of May 2014 !

TIF Publications

4th Pan-European Regional Conference

Regional News

TIF Executive Director nominated as candidate for the European Parliament Elections Patients’ Story

Other News

Obituaries

Calendar & Upcoming International Events

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.

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TIF Activities Around The World WPR A New Horizon for Haemoglobinopathies in China TIF has given a particular focus on China in late 2013 and early 2014, with workshops and delegation visits aiming at the incorporation and strengthening of prevention programmes for haemoglobin disorders, with a specific emphasis in the southern part of the country where haemoglobinopathies are most China prevalent. On 18-19 November 2013, an International International Seminar on Workshop on the Prevention of Birth Defects and Prevention of Thalassaemia was co-organised by the National Birth Defects and Health and Family Planning Commission (NHFPC) of Thalassaemia, the People’s Republic of China - which is the grouping 18-19 Nov 2013 of the Ministry of Health and the National Population and Family Planning Commission - and the Southern Medical University,in the city of Guangzhou,Guangdong Province, China. TIF was invited to participate in the faculty of the workshop’s speakers and Dr Androulla Eleftheriou (TIF Executive Director) and Dr Michael Angastiniotis (TIF Medical Advisor) attended and contributed to this workshop on behalf of TIF. Very importantly, the workshop was also attended by representatives of the Central Government of China, Provincial Officials of Guangdong Province, as well as leading academics and representatives of the WHO. These efforts have culminated in the signing of a Memorandum of Understanding between the nd Chinese Central Government, State Officials, and 2 Pan-South China Workshop, TIF, for the promotion of Prevention and Control 10-11 Jan 2014 Policies in Southern China. Additionally, the 2nd Pan-South China Workshop on Haemoglobinopathies, organised by TIF, took place on 10-11 January 2014, again in Guangzhou City, Guangdong Province, China. This workshop focused on the specific needs and challenges China faces regarding the management of haemoglobin disorders, in particular thalassaemia, thus taking forward the

ΜΑΥ 2014 www.thalassaemia.org.cy

previous work done in China. The workshop aimed to support in as many ways as possible patients with haemoglobin diseases in the southern provinces of China where β-and α-thalassaemia syndromes are most prevalent. The integration of haemoglobin disorders into the national policies of China needs to be prioritised and further promoted into other relevant policies and programmes of the government and health authorities of this country. Access to lifesaving drugs and adequacy of blood are important objectives for the next steps forward and the establishment of a strong network and productive collaboration with patient advocate groups in this country is deemed imperative. We are confident that TIF’s ongoing efforts to that end will make a considerable impact in the future. TIF strengthens its presence in Vietnam Positive steps were made in Vietnam, following a delegation visit made by TIF. For the purpose of strengthening the collaboration with the Vietnamese Thalassaemia Association (ViTA), and also assessing the current situation of thalassaemia services in the country, Dr Michael Angastiniotis (TIF Medical Advisor), visited Vietnam on 4-7 March 2014, following an invitation from ViTA, in order to discuss further joint action. The visit took place at the National Institute of Haematology and Blood Transfusion of Hanoi, where the thalassaemia services are located. The Institute, during TIF’s visit, received government recognition through an award for its achievements in an impressive ceremony. The award was received by its Director Prof Nguyen Anh Tri, who is also the President of ViTA. Moreover, a series of workshops and meetings were conducted with parents/patients, health professionals and officials of the Vietnamese Ministry of Health. The Vietnamese Ministry of Health has expressed its support for the development of necessary services for thalassaemia. During the meeting with the deputy Minister of Health, TIF expressed an interest in organising a side meeting to the 12th ASEAN, (Association of South East Asian Nations) Health Ministers’ Meeting that is scheduled to be held in Hanoi, Vietnam, in September 2014.This will be a very big step towards spreading awareness for thalassaemia among the member states of the ASEAN and towards initiating collaboration with the Health Ministries of its member states for the establishment and improvement of control programs for thalassaemia.

SEAR India makes a giant step for a brighter future TIF applauds the efforts made towards providing a brighter future for patients with haemoglobinopathies in India. As part of the Indian project and following two delegation visits and a series of Capacity Building workshops during last year, TIF organised a States’ Coordinators’ meeting in New Delhi, India, on 1718 December 2014, encompassing representatives from eight states, namely Delhi, Punjab, Haryana, Uttar Pradesh, Maharashtra, Chandigarh, Gujarat and Madhya Pradesh. As a consequence of the above efforts, TIF has undertaken the task to develop ‘Charters of Priorities’ for the Ministry of Health and Welfare (Central Government) and eight individual state Charters for each one of the participating states, mentioned above. These documents are of vital importance as they will serve as advocacy tools for national thalassaemia associations to instigate further improvements to the health care services provided to our patients in these states and by extent to hopefully activate other Indian states to follow. The official hand-over of the documents to Ministry of Health officials at the Central Government and State Government level has taken place in the course of a parallel meeting, in the context of the 7th National Thalassaemia Conference, organised by the National Thalassaemia Welfare Society (NTWS) on 19-20 April 2014, in New Delhi. Finally, within the framework of the abovementioned meeting, TIF is organising an educational session for States’ representatives with regards to lobbying Government and advocacy skills, and set a time frame for monitoring and an evaluation of the outcome of this project, and next steps forward, in the course of 2014 and 2015. EMR TIF initiates aid in Afghanistan The issue of thalassaemia in Afghanistan, a warridden country, is one of vital importance that has been on TIF’s agenda for a long time and the focus of the Educational Thalassaemia Symposium for the training of Afghan medical specialists and other health professionals, which took place in Shiraz, Iran, on 5-6 February 2014, in which TIF participated, represented by Dr Michael Angastiniotis, (TIF Medical Advisor).

This was a noteworthy event organised by the Haematology Research Centre and the Thalassaemia Care Centre in Shiraz. The meeting was supported by Mrs Fatemeh Hashemi, TIF Board Member and Chair of the Charity Foundation for Special Diseases (CFFSD). The delegation from Afghanistan consisted of representatives from MEENA Health Welfare Organisation, a patient association in the country, Ministry of Public Health Officials, as well service providers from hospitals and blood banks. Afghanistan is a high prevalence area for thalassaemia but health services have suffered from many decades Participants in of instability and war. One hospital has reported 1500 the workshop for thalasaemia major patients. The symposium gave the the professional opportunity not only to inform the delegation on from Afghanistan the services needed but also to gather information - Shiraz (Iran) which TIF can use to assist in the planning of services. Feb 2014 In addition, Dr Afrasiabi, Head of the Thalassaemia Laboratory of the Centre in Shiraz, was able to present to participants details of the prevention programmes as applied in this part of Iran, so that the necessary element of prevention is not forgotten. EUR Setting the foundations for success: The 5th European Symposium on Rare Anaemias and the 1st National Conference on Thalassaemia The 5th European Symposium on Rare Anaemias and the First National Conference on Thalassaemia, took place on 15-16 November 2013, co-organised by TIF and the ENERCA Project, in collaboration with the Italian National Federation for Thalassaemia, Rare Haemoglobinopathies and Sickle Cell Disease (UNITED). Dr Michael Angastiniotis (TIF Medical Advisor), actively participated in this workshop,

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supporting strongly the urgent need for the development of a registry and specific policies for haemoglobin disorders in European Member States. This conference provided the opportunity to exchange views on the most important scientific advances in the treatment of haemoglobinopathies, covering therapeutic innovations for medical complications and the new iron chelating therapies.

Question & Answer Session at the Cyprus Institute of Neurology and Genetics

Patients ask international experts! TIF and the Cyprus Thalassaemia Association coorganised a question and answer session between the patient community in Cyprus and international experts on 17 January 2014 at the Institute of Neurology and Genetics in Nicosia. International experts, Prof. Ali Taher from Lebanon, Prof. Maria. D. Cappellini from Italy and Prof. John Porter from the UK engaged in a lively discussion on issues pertaining to the clinical management of thalassaemia.

Kick Start in Limassol: Capacity Building Workshop Capacity Building Workshop Aiming to enhance the patients’ existing knowledge regarding treatment and patient rights, TIF has organised in collaboration with the Limassol ThalassaemiaAssociation a capacity building workshop on 25 January 2014. This initiative constitutes part of TIF’s ‘Expert Patients Programme’. This programme has already been implemented in several countries around the world and has been tailored to meet the patients’ needs and level of knowledge. Due to the great success of this initiative, additional workshops are planned in Cyprus, by the Cyprus Thalassaemia Association for 2014, covering the regions of Nicosia, Larnaca, and Paphos.

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Steady Steps in Greece TIF attends the Annual Pan-Hellenic Congress for Thalassaemia The Annual Pan-Hellenic Congress for Thalassaemia was successfully organised by the Greek Thalassaemia Federation, under the auspices of TIF, on 29 - 30 November 2013 in Athens and was attended by TIF President, Mr Panos Englezos, and TIF Executive Director, Dr Androulla Eleftheriou. An interactive round-table discussion concerning European Policies for Haemoglobinopathies was coordinated jointly by Dr Eleftheriou and the General Secretary of the Greek Thalassaemia Federation, Mr Vassileios Dimos. In this context, the EU Policy Report on Migration entitled “Haemoglobinopathies on the Move: Is Europe ready? A policy analysis of 10 European countries” was presented. This report was officially launched at the European Parliament in June 2013.The Report has been drafted by TIF in collaboration with the ENERCA medical experts and the International Organisation on Migration. Supporting the voice of patients with Sickle Cell Disease TIF has issued a position paper regarding the clinical management of sickle cell disease in Greece. Distributed to the Ministry of Health, this position paper outlines the grave importance of the urgent implementation of international guidelines for the treatment of sickle cell disease patients in each hospital unit. TIF has already proceeded, in collaboration with international experts and ‘KINISI’ Pan-Hellenic Thalassaemia Association to translate and publish the United Kingdom’s Standards of Care for the Clinical Management of Adults and Children with Sickle Cell Disease in Greek. These publications together with the position paper will be of vital importance to appropriately inform the medical and paramedical community about the timely diagnosis, monitoring, and clinical management of this disease.

A vision turned into action: the establishment of a Haematology Organisation for Patients in Europe (HOPE) A new umbrella organisation encompassing patient associations with haematological disorders, malignant and non-malignant, has been founded. The founding of HOPE (Haematologic Organisation of Patients in Europe) has been welcomed by all stakeholders, including TIF. This new initiative, aims to bring together European umbrella organisations which represent patients with haematological diseases, in order to advocate on a European level, with a unified voice, where cross-cutting issues are concerned. TIF has welcomed this new forum as a platform to further strengthen the voice of patients with thalassaemia and sickle cell disease to the European medical community, and to the EU governing bodies, including the European Parliament and Commission. Building patients’ knowledge on therapeutic innovation: Reaching a public audience on medicines development The European Patients Academy on Therapeutic Innovation (EUPATI), a project funded by the Innovative Medicines Initiative (IMI), has successfully organised its third workshop in Warsaw, Poland. TIF actively participated in this workshop that focused on ‘Reaching a Public Audience on Medicines Development’. This 2014 workshop was designed to draw on the social research work effectuated in 2013, involving patients and citizens across Europe, and to get views on successful examples of information sharing. The 30 partner organisations of EUPATI aim, by the end of the project in 2015, to develop and provide user-friendly information and education resources on medical development, create the leading public library on patient-friendly information, establish a sustainable website and information service to provide up-to-date information and demonstrate how patients can get involved in research and development thus supporting ongoing and future medicines and clinical trials.

Participation at the International Liver Congress 2014, the 49th Annual Meeting of the European Association for the Study of the Liver (EASL) It is our pleasure to announce thatTIF has participated in the European Association for the Study of the Liver (EASL) Conference that took place on 9-13 April 2014, in London, UK. This cosmopolitan city and home to renowned medical schools, universities and hospitals has welcomed us to celebrate 49 years of achievements in the fight against liver disease. TIF, through its participation with a booth at this important event, has successfully embarked on informing and raising awareness amongst liver specialists globally on the issues pertaining to chronic hepatitis infections in multipally-transfused populations, such as thalassaemia. The International Liver Congress (ILC) 2014 built on its record breaking success by providing multiple opportunities to exchange expertise and network. Again this year, the International Liver Congress offered an outstanding and attractive programme enhancing the scientific and educational contents for an ever growing number of international delegates. The collaboration with ASEAN continues… TIF has made great efforts to promote haemoglobinopathies in the agendas of selected affected Asian countries, through the Association of South East Asian Nations (ASEAN), a strong socio-economic body which oversees health and other matters in 10 countries of South East Asia that constitute its member states. TIF is now focusing on the next ASEAN gathering, which will be the 12th ASEAN Health Ministers’ Meeting (12th AHMH), to be held in Hanoi, Vietnam, in September 2014. As this is a closed meeting and participation from external stakeholders is not permitted,TIF endeavours to organise a side-meeting to the 12th AHMH, inviting the Health Ministers of ASEAN member states, key medical specialists and other influential officials for a productive discussion of avenues through which TIF can raise the profile of thalassaemia in the health agendas of these countries and assist them in implementing effective prevention and adequate management programmes.

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TIFMAGAZINE

International Collaborations

Strengthening our collaboration for blood safety activities around the world In the framework of TIF’s efforts to promote the safety and adequacy of blood worldwide, ways are being investigated with which the number of voluntary non-remunerated blood donation services can be considerably strengthened. To promote the blood adequacy for patients across the world and to prevent wasteful practices, TIF has requested from official health bodies, such as the WHO Blood Safety Department, the International Federation of Blood Donor Organisations, the European School of Transfusion Therapy, the International Haemovigilance Network and the Council of Europe, to consider the inclusion of uncomplicated haemochromatosis patients as blood donors, which will lead to strengthening the general blood adequacy worldwide. Concomitant to the above, a response has been provided by the European Directorate for the Quality of Medicines and Healthcare (EDQM) of the Council of Europe, which has put this matter on the

agenda of the meeting of the European Committee on Blood Transfusion in late March. Haemochromatosis patients are excluded in many

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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countries from giving blood in donor campaigns, regardless of the fact that it is a hereditary disorder, not transmissible via blood and not related to transmission of any pathological organisms. Given that the most common treatment of haemochromatosis is the draining of blood, and the subsequent discard of the blood, we consider this practice to be extremely wasteful,especially in countries and regions where blood adequacy constitutes a huge problem for thalassaemia patients. TIF is focused for 2014 on strengthening collaboration with all blood-related establishments in an effort to better map services and target its activities more effectively in each of its member countries. Once more TIF will participate at the 19 Annual Congress of the European Haematology Association (EHA) TIF will participate in the Patient Advocacy Session of the 19th Annual Congress of the European Haematology Association (EHA), to be held from 12 - 15 June 2014 in Milan, Italy. This session is dedicated to patient organisations that work together to advocate issues of common interest in the field of haematological diseases.TIF represents of course the non-malignant part of haematology.TIF’s participation at this important conference will be focused on: • The launching of the new publication of TIF “Guidelines for the Management of Transfusion Dependent Thalassaemia (TDT)”, with extensive distribution to haematologists, an official press release, etc. • Participation in the faculty of the Patient Advocacy Track, which this year will discuss two very ‘hot’ topics - ‘The challenges of young patients with old people’s diseases’ and ‘Generics in Haematology’ • The distribution of TIF’s Educational Material at a dedicated exhibition booth. th

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TIF has put forward several crucial matters that have strengthened its collaboration with the WHO Headquarters,but also with theWHO Regional Offices. TIF has furthermore embarked on a reinforcement of its collaboration with the WHO Blood Transfusion Department through joint activities in order to raise awareness on the safety and adequacy of blood, especially in countries where there is high prevalence of haemoglobin disorders (thalassaemia and sickle cell disease) in the population. Global Partners’ Meeting on Hepatitis, 27-28 March 2014 - WHO Headquarters, Geneva, Switzerland TIF Executive Director, Dr Androulla Eleftheriou, has been invited to participate and contribute to the formulation of a declaration for a ‘Call of Action’ for WHO member states in response to the global status/epidemic of these diseases, and the levels of response in each country. The aim of this meeting was to decide upon future actions for enhanced hepatitis control worldwide, and the promotion of the prevention and management of viral hepatitis.This meeting, the Global Partners’ Meeting on Hepatitis, organised by the World Health Organisation (WHO), took place in Geneva, 27-28 March 2014. Closer Collaboration of TIF with the Blood Transfusion Safety Department of WHO Request to WHO about the possibility for TIF to become an NGO in official relations with its Blood Transfusion Safety Department TIF strongly believes that it could have a more beneficial collaboration with the Blood Transfusion Safety Department of the WHO, in addition to its Non Communicable Disease Department, with which TIF has been collaborating for many years regarding haemoglobinopathies. There have already been a number of successful collaborations in the past with the Blood Transfusion Safety Department from TIF’s participation in activities of the Department or from the Department’s contribution and participation in TIF conferences and educational programme.

We are looking forward to receiving the thoughts of the Coordinator of the Blood Transfusion Safety Department on supporting TIF to become an NGO in official relations with this Department of the WHO. Collaboration of TIF with the WHO Regional Office for the Eastern Mediterranean (EMRO) In the scope of TIF’s strengthened collaboration with the WHO Regional Office for the Eastern Mediterranean (EMRO), the new Director of the Non-communicable Diseases & Mental Health (NMH) Department, Dr Samer Jabbour, visited TIF Headquarters in Cyprus on 13 February 2014. The purpose of this meeting was to discuss with TIF President, Mr Panos Englezos, TIF Executive Director, Dr Androulla Eleftheriou, and TIF Medical Advisor, Dr Michael Angastiniotis, ways to move forward in the countries of the Eastern Mediterranean Region of the WHO. More specifically, this meeting made reference to the promotion of services for haemoglobin disorders in the region of Eastern Mediterranean, a geographical area where these disorders are particularity prevalent. Furthermore, in the context of this visit, Dr Jabbour, accompanied by TIF officials, met with a representative from the Ministry of Health of Cyprus, Dr Christodoulos Kaisis, who is acting as Deputy Director General of the Ministry of Health. Dr Jabbour also visited the Cyprus Thalassaemia Centre and its Laboratory of Population Screening, as well as the Thalassaemia Laboratory at Cyprus Institute of Neurology and Genetics. TIF has collaborated extensively with the medical and patients’ communities in almost every country of the Eastern Mediterranean region and has developed very close ties and important networks, many of which have had extremely fruitful outcomes. In addition,TIF has enjoyed a productive collaboration over the years with EMRO on a number of topics and has put forward a number of proposals for future collaboration.

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TIFMAGAZINE

Fostering a strengthened collaboration with the WHO

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International Thalassaemia Day! Join Us! March with us on the 8th of May 2014!

Our activities explained in further detail…

Many exciting activities are in store for the International Thalassaemia Day! Like every year, this year the International Thalassaemia Day has a different theme, aiming to fulfil the mission of enhancing lives and exceeding expectations for patients living with thalassaemia across the world. The 2014 theme: ‘Economic Recession: Observe - Join Forces - Safeguard Health’. This year’s theme highlights the need to support policy decisions that reduce health inequalities, with particular focus on countries affected by the financial and economic crisis.The global financial crisis has already had wide-reaching social, economic, and political impact, with some of its most devastating consequences affecting the quality of healthcare. As the days approach for the International Thalassaemia Day, honoured every year on the 8th May, TIF has organised many activities in the days leading up to the 8th of May.

Below, the activities and events that are to take place for the 8th of May: Activities for the 8th of May

8th of May Toolkit 8th of May Blog 8th of May Videos International Photography Contest Cyprus National Pupil Drawing Contest “Red Skies”: Collaboration with Emirates Airlines Foundation for the establishment of a Campaign to alleviate patients with Thalassaemia and Sickle Cell Disease

Events for the 8th of May week

Date

Project

Time

2 May 2014 Second Formal Meeting for the Ambassadors Circle 18.00 6 May 2014 Workshop for Medical Journalism 10.00 6 May 2014 Exhibition for the Cyprus National Pupil 16.00 Drawing Competition 6 May 2014 Award Ceremony for the Cyprus National Pupil 16.00 Drawing Competition 8 May 2014 Press Conference for the International Thalassaemia Day 10.00 8 May 2014 Blood Donation dedicated to International Thalassaemia Day 10.00 8 May 2014 School Visit at the English School 7.45 8 May 2014 School Visit at the GC Schools of Careers 9.15 8 May 2014 School Visit at the Lykavitos Elementary School 11.00

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Venue Hilton Hotel, Nicosia Filoxenia Conference Centre,Nicosia Journalist House, Nicosia Journalist House, Nicosia Ammochostos Gate, Nicosia Ammochostos Gate, Nicosia English School, Nicosia GC Schools of Careers, Nicosia Lykavitos Elementary School

TIF’s International Photography Contest! TIF is pleased to announce the launch of an International Photography Contest for the Thalassaemia International Day 2014! The aim of the contest is to raise awareness about thalassaemia in the context of the World Thalassemia Day, celebrated each year on May 8. The subject of this photography contest is based on this year’s theme for the 21st International Thalassaemia Day. Creation of an 8th of May Blog We are pleased to announce the creation of our new blog, dedicated to the 8th of May activities! TIF has created this blog with the purpose of providing a means to the members of the worldwide thalassaemia community to exchange ideas, chat, discuss, and make suggestions about the 8th of May activities around the world. The link to the blog is available on our website, our Facebook and our Twitter page. We invite you to share your ideas and thoughts for the International Thalassaemia Day! Please visit

our new weekly blog through the following link. http://tifthalassaemia.weebly.com/about.html

Spread the message through our 8th of May videos! TIF has undertaken two exciting projects which involve the creation of the following two videos! The International Thalassaemia Day Cartoon Video - an amusing video aiming to spread awareness about important facts regarding thalassaemia, created in the context of this year’s International Thalassaemia Day, has been finalised and is available for viewing on our YouTube page on the following link https://www.youtube.com/watch?v=cvwNvdEAUNk

A Video about TIF and Thalassaemia in Cyprus, which will include a message for the 8th of May 2014 from TIF President, Mr Panos Englezos, is expected to be finalised in May 2014.

ΜΑΥ 2014 www.thalassaemia.org.cy

Visit our 8th of May Blog

Designed to reach the entire spectrum of the medical and patient community Safeguard Health! Drawing contest in schools in Cyprus! The Ministry of Education and Culture of Cyprus and the TIF are organising a drawing competition for High Schools and Senior High S c h o o l s (students from 12-17 years of age). The entries for this contest will be displayed at an exhibition on the 6th of May 2014 and the names of the winners will be announced during an Award Ceremony to be held on the same day. 2nd Ambassadors’ Circle Meeting It is with great pleasure that we announce that the 2nd Ambassadors’ Circle Meeting will take place on 2 May 2014 in Nicosia. The Ambassadors of country members of TIF have been invited and have shown an avid interest in participating in this meeting. This meeting is of vital importance for the productive promotion of TIF’s activities in the Ambassadors’ own countries and it will be extremely valuable in the Federation’s work at the country level. Interactive Discussion on Medical Journalism in Cyprus In the context of the International Thalassaemia Day 2014, TIF will organise an Interactive Discussion on Medical Journalism in Cyprus, addressed to Cypriot journalists, with the aim of creating awareness about the role of the journalist in safeguarding the rights of patients amidst the financial crisis. This event has been placed under the auspices of the University of Nicosia in Cyprus as well as the Cyprus Journalist Union. Renowned speakers from the BBC will be participating in this interactive discussion as speakers.

ΜΑΥ 2014 www.thalassaemia.org.cy

Project 8 “Red Day” Spreading Awareness through our School Activities and Educational Visits in Cyprus: This year’s school activities are aimed to raise awareness about thalassaemia in students between 10-12 years old. This educational visit will include activities targeting to inform students about preventing and treating thalassaemia. Furthermore, these activities aim to promote equal access and equal rights to quality health care for all individuals. The school activities for the day include the following: 1. Educational presentation by TIF about thalassaemia, especially designed for children. 2. Presentation of the Animated Cartoon “All About Thalassaemia” 3. Games and Quizzes 4. Distribution of the cartoon book “All About Thalassaemia” in English. The sky is the limit: Collaboration with Emirates Airlines Foundation On the occasion of this year’s International Thalassaemia Day 2014, and within the activities of Project 8, TIF has initiated a collaboration with the Emirates Airlines Foundation with the view of

In proof of the general spirit and zeal which TIF invests in its Educational Programme, we refer to the vast extent of our medical publications as well as to the number and value of our periodical journals, and we are excited to share our publication news with you! TIF’s Publications are designed to reach the entire spectrum of the medical community, including patients, doctors, and medical specialists. Incredibly well researched and assembled, TIF’s widely read publications are renowned in the medical community and distributed free-of-charge, they are a great source of insightful content and features relevant to its audience.TIF caters to both the professional and personal interest of its readers keeping them up to date on all news relevant to haemoglobinopathies. To date, TIF has published 19 books and pamphlets, translated into many languages and distributed 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 Management of Transfusion Dependent Thalassaemia (TDT) is expected to be finalised in June 2014. In 2013 alone, requests for TIF publications totalled some 6,500.

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TIF Publications:

TIF PUBLICATION NEWS OUT NOW!!! Community Awareness Booklets on α-thalassaemia, β-thalassaemia & Sickle Cell Disease (English). (Eleftheriou, A.) The animated cartoon “All about Thalassemia” has now been dubbed in Arabic! Visit the following link to watch: http://www.youtube.com/watch?v=dAZi8q3CVyc&feature=youtu.be. Available on NLM Bookshelf site: • Emergency Management of Thalassaemia. • Guidelines for the Management of Non Transfusion Dependent Thalassaemia (NTDT). • Prevention of Thalassaemias and other Haemoglobin Disorders, 2nd edition, Volume 1. • Prevention of Thalassaemias and Other Haemoglobin Disorders, Vol 2, 2nd edition: UPCOMING TIF PUBLICATIONS • Sickle Cell Disease: A booklet for parents, patients and the community, 2nd Edition (Inati-Khoriaty A) • Guidelines for the Management of Transfusion Dependent Thalassaemia (TDT), 3rd Edition (Cappellini, M.D., Cohen, A., Eleftheriou, A., Piga, A., Porter, J., Taher, 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. starting a new project, the “Red Skies” aiming to raise awareness about haemoglobinopathies to over 10,000 airline passengers.

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”

ΜΑΥ 2014 www.thalassaemia.org.cy

We are expecting you at the 4th Pan European Conference on Haemoglobinopathies & Rare Anaemias! Join us! With great pleasure we announce that the 4th European Conference for haemoglobinopathies and Rare Anaemias, organised by the Thalassaemia International Federation (TIF), in collaboration with the Greek Thalassaemia Federation, will be held on 7-9 November 2014 in Athens, Greece. The 4th European Conference will be a landmark event, bringing together specialists and experts in the field of haemoglobinopathies and rare anaemias, as well as patients’ representatives from European countries. We extend a warm invitation to medical specialists, health professionals, patients and the community at large, from all European countries to attend this Conference that will take place in Athens and we look forward to it with great enthusiasm! Stay tuned! The conference program will be posted shortly on TIF’s website (www.thalassaemia.org.cy)!

ΜΑΥ 2014 www.thalassaemia.org.cy

Summary Programme 4th European Conference The programme of the 4th European Conference for Haemoglobinopathies and Rare Anaemias will provide a unique platform for exchanging knowledge and experiences between participants.

TIFMAGAZINE

Join us for the 4th Pan-European Conference on Haemoglobinopathies and Rare Anaemias!

The scientific programme, rich and multifaceted, will focus on issues related to prevention, iron chelation, methods of treating complications and developing criteria for haemoglobinopathies’ reference centres and their accreditation, as well as the impact of the economic crisis in the health sector. World-renowned speakers, who specialise in the field of haemoglobinopathies, will participate in this conference. Through interactive discussion, the programme dedicated to patients with thalassaemia and other haemoglobinopathies - will focus on developing skills both to patients and to patients’ associations in Europe. The patients’ programme will cover issues concerning the creation of a successful patient association with economic sustainability and development strategy to achieve its objectives. The organisation of the conference in Greece is an excellent opportunity, highlighting the remarkable achievements of the patient/parent community throughout the last decades and the struggle to preserve these rights in a background of economic austerity. TIF through this interactive programme aims to promote worldwide achievements in terms of medical and social issues. Apart from this interactive programme, patients for the first time will have the opportunity to participate in a special question and answer session with international experts.

Who should attend? • • • •

Patients and patient organisations Healthcare professionals / medical specialists Academics / researchers Policy makers at national, regional and EU level

ΜΑΥ 2014 www.thalassaemia.org.cy

Pakistan The Minister of Local Governance of Pakistan, Mr. Inayatullah Khan, visited the Hamza Foundation Welfare Hospital and the Thalassaemia Center in the city of Peshawar, in the Khyber Pakhtunkhwa Province, in Pakistan on 19 December 2013. On this occasion, the Founder/Chairman of the Hamza Foundation, Mr. Ijaz Ali, enlightened the Minister about the Foundation’s activities and its field of work. The Minister has expressed his commitment to the Chairman of the Hamza Foundation to make all possible efforts to implement Thalassaemia Prevention Programmes in the Khyber Pakhtunkhwa Province of Pakistan and to support the construction of the Hamza Foundation Welfare Hospital. He also met with thalassaemic patients and their parents.

India In Bhopal, the Madhya Pradesh Council of Science & Technology and the Department of Biotechnology of RKDF University co-organised the “Hands-on Training in Molecular Analysis of Haemoglobinopathies”, promoted by the Global Research & Welfare Society in Bhopal (GRWSB), on 3- 8 March 2014 at the Department of Biotechnology of the RKDF University, in Gandhi Nagar, Bhopal.

Think Foundation in collaboration with the Mahindra Finance Services Ltd in Mumbai organised a One-Day Blood Donation Camp on 5 February 2014 at the Mahindra Finance Services Ltd Premises, Worli. Volunteers from all parts of India and ethnic communities participated on a large scale for this noble cause. The camp in its true sense portrayed unity in diversity, the foundations which matter today. Furthermore, the Thalassaemia Children Welfare Society organised a Workshop in Ulhasnagar entitled “Thalassaemia Major Patients Can Live Normal Life” on 25 January 2014. Dr B.M. Agarwal & Dr Vijay Ramanan, conducted this workshop in a patientfriendly language.

ΜΑΥ 2014 www.thalassaemia.org.cy

Iraq On 11 March 2014, the Thalassaemia Association in Niniva (NTA) welcomed talented and gifted fifth grade students from different schools of Nineveh, where they met with the Vice President of the NTS. The students also toured the Thalassaemia Centre hospital, in Ibn Al Atheer. During the meeting, the students also benefited from a lecture regarding thalassaemia in Mosul, and the role of the Thalassaemia Association in Niniva (NTA) in the improvement and development of the prevention and clinical management of thalassaemia, with emphasis

on the need to seek volunteer work. Students were encouraged to specialise in key areas that concern haemoglobinopathies. Furthermore, the cultural and social forum of Thalassemia Association in Nineveh organised the first Spring Camp for Thalassaemia patients aged over 17 years. This event took place in the Alasdair Tourism Compound in Mosul in the governorate of Nineveh, on 13-14 of February 2014.The number of participants of the camp reached over 65 and included doctors from the Thalassaemia Centre and Thalassaemia patients and their friends and families from the Mosul University / College of Administration and Economics. The slogan for the first Spring Camp of Thalassaemia is “Our future is beautiful”.

Sri Lanka Ms. Claudia Rutt, former CEO of the German Bone Marrow Donor Center (Deutsche Knochenmarkspenderdatei GmbH - DKMS) in Germany, visited Sri Lanka on 15 January 2014. Ms. Rutt was received by the Lanka Thalassaemia Circle, where she was welcomed by thalassaemic children. She has also participated in the assembly of the Lanka Thalassaemia Circle. Confirmatory swabs were taken to determine the HLA compatibility between thalassaemic children and their siblings, for future bone marrow transplantation.

United Arab Emirates The 2nd December 2013 was marked by the auspicious 42nd UAE National Day, and Emirates Thalassaemia Society (ETS) has celebrated this special day with Thalassemia patients, doctors, and medical staff in hospitals all over UAE. The Emirates Thalassaemia Society organised a fun-filled and colourful workshop for arts and crafts, which included UAE-themed pattern art, mirror drawing, T-Shirt painting, nail art, and many competitions. Thalassaemia patients, doctors, nurses, and families participated actively and expressed their desire to hold the workshop on a yearly basis.

ΜΑΥ 2014 www.thalassaemia.org.cy

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Regional News

Patient’s Story Living in a house of cards... By Somdutta Sarkar

Congratulations to T I F Executive Director, Dr Androulla Eleftheriou, who has been nominated by the Democratic Party of Cyprus as a candidate for the European Parliament in the upcoming elections of the European Parliament, due to take place on the 25th of May. We wish her every success in her endeavours and all the best! “Dr Androulla Eleftheriou has provide d constant support to the Human Gen etics Programme of the World Hea in its efforts to increase public awa lth Organisation reness of the problems of thalass aemia at the national and interna capacity as a Head of a WHO Coll tion al levels. In her aborating Centre in Cyprus and an Executive Director of the Thalassaem Federation, which is a nongovern ia International mental organisation in official rela tions with WHO, Dr Eleftheriou ach amount of progress in networki ieved a substantial ng international understanding of the problems associated with thal international workshops, scientific assaemia at the conferences and training courses org anised under her auspices. With her energy and commitment, Dr Elefther extraordinary iou is considered to be an excepti on in her field in her efforts to help whether in a personal or an offic and encourage, ial capacity, those who suffer from thalassaemia” Dr Victor Boulyjenkov

A Former Head, Human Genetic

s Programme, WHO

“It gives me great pleasure to sup port the Democratic Party of Cyp rus who have proposed the nam Eleftheriou as a candidate for the e of Dr. Androulla European Parliament. Her work has entailed organisation of the the better management of this con programmes for dition in many countries of the wor ld notably those in the Mediterran in South and Southeast Asia. She ean region, and has shown extremely effective org anisational ability and a remark interacting with both families affe able facility for cted with this disorder and the gov ernments of many different countri Federation has been active. Dea es in which the ling with a common illness of this type requires extreme sensitivity interact with people at all levels and the ability to and she has turned out to be ext remely gifted in all these aspects because of her high work rate, exc of her wor k. Hence, ellent organisational skills and wid e international experience dealing all levels, she is an extremely stro with people at ng candidate for the European Par liament” David Weatherall

Professor Sir David Weatherall MD Regius Professor of Medicine Eme FRCP FRS ritus, University of Oxford, United Kingdom

“I was happy to hear about the nom ination of Dr Androulla Eleftheriou as a Democratic Party candidate European Parliament elections. Per for the upcoming sonally, I think she is an ideal candida te combining academic and scientifi with the necessary experience c qualifications, on the implementation of nationa l and international programs. She tackle public health issues and has achieved to effectively participate in special action groups of the Public Hea European Commission. As the Exe lth program of the cutive Director of TIF, she has dem onstrated remarkable administrati and collaborative capabilities thro ve, organisational ugh the ongoing expansion of edu cational, therapeutic and preven prevent and manage thalassemi tive programs to a and hemoglobinopathies in a significant number of developing successful organisaton of Interna cou ntries and the tional Conferences about Thalass emia - Hemoglobinopathies for medical community” the patient and the

Christos Kattamis, Distinguished Professor of Pediatri cs,

University of Athens

PSU, considered as a prestigio ity I was born in Delhi where I was declared as an in the usmediaopportun institute intermediate thalassaemic. When I was a child, my parents where I was studying. moved to a small town in the East, where I grew up and But, of you know, went to school. Although I enjoyed the comforts of a small thereasis nomany room a resume town, back then, my condition was a novelty for the medical for non-cominmunicabl e practitioners in the area. genetic condition s. My Blood transfusions were a big deal at the time. My results were above par, cautious paediatrician always insisted on transfusion my credentials spotless, through the cubital vein in the arm, a tourniquet. I was but the kept me required to stay overnight at the hospital on several hanging company for three occasions after each transfusion. Looking back, I can admit simply because, months, once that these procedures were safe, but for a child, they were again, they didn’t know just as bad as monsters under the bed. For a long time, what to do with a thalassemic patient. It was the first time I think, my childhood was largely about missing school, they had stumbled across such having to stay in class during lunch-breaks and games, chance upon Thalassaemics Indiaa case. I was fortunate to missing school trips, frequent trips to the hospital, and the support I needed at the time. at this point, offering me Things turned up eventually, having to be bribed into going through with transfusions and yes, I am successfully employed in the same company when they became necessary. Why? Because my parents for two and a half years now. were wrapping me in a bubble, to keep me safe. fortunate and privileged… but very few people You know how it is, you discover your only child has this are. IThewasother night, on NTDV’s 25 Greatest Global Living strange medical condition and you hit the Panic Button. Legends, Mr Ratan mentioned that he dreams of a And as a child, you grow up among prophets of doom, not day when India will Tata be a getting to know a normal life but one of restrictions and We still have a long waycountry of equal opportunities. precautions. You become conditioned into believing that it’s legislation in the country, to go. There is no adequate no Employment Protection not for you to stand up and take charge in life. Act, no effective infrastru cture, Thankfully, I turned out to be allergic to bubble awareness about thalassemia. no interest in spreading It is only recently that wrapping. Once I was old and mature enough to take stock non-communicable disease programs of my physical capacities and realized that I was fortunate Yes, any positive change - however have been developed. small - is good, but it enough to be alive, active, and healthier than many others, can only get better. things started changing for the better. I had a splenectomy that’s my story, what have I learnt from it? during the time, which is worth mentioning, because it was a ThatSoliving with thalassemia is like living in a house concrete step towards the management of my thalassemia, of cards. A few cards drop, you might still be standing, and made things better for me, because transfusions were until that one card in the balance drops, and the entire reduced to the minimum. house crumbles . Incidenta lly, in ancient China, each year I’ve spent most of my life in three distinctly different during flood season, all homes cities, a small town, a metropolitan city, and the capital of are destroyed. Each year, the along the Huang He River people have to rebuild their the country, and I got to experience the different levels of homes and their lives. In Japan, traditional houses are treatment for thalassaemia which vary from town to town. built of bamboo so that they will sway during earthquakes Because of this, my patient curve is a jagged line… like an and not collapse until the very worst. So, I’ve also learnt aircraft in a storm. While in Delhi, international standards that we must make the best with what we have… we must of treatment are being followed, in small towns and lower make compromises, we must rebuild things, we must fall SEC categories across the country, it’s not that easy. so we can pick ourselves up, and we must carry on. Because People don’t know what to do with a thalassemic patient. we have to believe that there are far far better things for There is no proper infrastructure, not enough donors, and us ahead than we leave behind. safe blood is always a problem. On the other hand, in a place like Kolkata, medical facilities are so much better but haematologists prefer a much more conservative approach. The other incident I’d like to share is that during the 22 years of my education, being a thalassemic patient was never an issue for me, until my first job. During campus placements, I received an offer from an international ΜΑΥ 2014 www.thalassaemia.org.cy

TIFMAGAZINE

Congratulations!

Communications The TIF social media and communication material have gone through many dynamic and exciting upgrades and developments! We invite you to share our updates, sign up for our monthly newsletter, engage us with questions, and get involved in our work! We’d love to hear how you are joining the fight against thalassaemia. The new TIF Website is here! 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 will find it interesting, informative, and user-friendly. We welcome your feedback and comments. Upgraded TIF Newsletter! We are thrilled to announce to you that our newsletter now has a new format, stylish appearance and updated content. We hope you will find it insightful and interesting. You can find it by visiting on the following link http://www.thalassaemia.org.cy/ newsletters/2014-01/tif_newsletter_201401.html Please stay tuned for this month’s newsletter. TIF Greek Magazine - The effort continues... The publication and distribution of the Greek version of the TIF Magazine to the patient and medical community in Greece, is currently underway. This is an initiative that has prompted immense support and excitement from Mr Ioannis Levidiotis (of the Pan-Hellenic Association of Mediterranean Anaemia “KINISI”, Greece) for its continuation in 2014.

Projects At the forefront of the fight against thalassaemia and the haemoglobinopathies, TIF has now expanded its plans to include the undertaking of many groundbreaking and pioneering projects. We would like to provide you with an update on some of the most exciting news regarding our projects. TIF is actively involved in ventures that revolve around education, research, networking and the multitude of topics relating to thalassaemia and the haemoglobinopathies, through its constantly increasing number of projects.

ΜΑΥ 2014 www.thalassaemia.org.cy

Exciting new project promises to aid and improve the lives of people living with Thalassaemia: The Mobile Application program “Thal Health Web App” TIF is taking on a new and much needed project to develop and deploy an innovative mobile program to greatly aid and improve the lives of people living with thalassaemia. The envisioned program, delivered via mobile app, has the potential to reach millions of people around the world living with this challenging disease.

There are thousands of social networks and applications for general purposes but none that have been designed specifically for the thalassaemia community and with the depth of knowledge required to add true value to this community. We are already underway with our needs assessment phase for the programme and are ready to move into setting resources and performance objectives leading to full development and deployment.

The overall goals of this program are to give people living with thalassaemia, their families and caregivers, a private mobile support network and a suite of tools to simplify daily management and inspire overall health. The Thal Health Web App helps to connect the thalassaemia community to one another and to those that care for them. The application will be designed with active input from the thalassaemia community to ensure value, ease of use and applicability. Thal Health Web App will be easy to use, personalized and provide users with helpful tools to manage everything from medication reminders to appointment scheduling, from mood and mobility levels, to transfusion dates and accessing the latest research.TIF views this approach to patient care and the use of mobile technology for patient empowerment and outreach as a critical component of the overall thalassaemia care ecosystem.

Moving the MRI Project Forward... The MRI Project is a promising project that has been undertaken and put forward by TIF. The use of MRI and more specifically of the T2* sequence, a software used for assessing cardiac iron non-invasively, has now become the most widely available and validated method for iron overload to-date. TIF, with its continuous quest for and vested interest in providing the best possible care to patients with thalassaemia across the world, has undertaken the initiative to promote the installation and use of this technology in major hospitals and/or reference centres in ‘affected’ countries. TIF is currently at the stage of developing material for patients/parents, medical specialists, and radiologists/technologists. In addition, TIF is in the process of mapping MRI services within its member countries, by reviewing and compiling the information of each country and the methodologies used to measure heart and liver iron overload.

More specifically, the goals for the program are to develop a cross-platform mobile tool that enables: • Private, peer-to-peer and peer-to-caregiver support networks to reduce isolation and improve the patients’ sense of support; • Easy to use, simple health tracking and information management functionality that eases the daily challenges of disease management; • Data visualization tools that translate health tracking into visual format thus providing an easy and motivating way to chart personal health; • Medication and appointment reminders to encourage adherence and timely care; • Educational and research information channel that users can post privately or share to their social networks, more broadly, like Facebook,Twitter etc. to improve awareness, empowerment and prevention.

E-ENERCA: bringing experts together to improve public health services in the field of rare anaemias TIF has played a leading role as a partner in the European Commission-funded project e-ENERCA (European Network for Rare and Congenital Anaemias). At this stage of the e-ENERCA project, one of the most ambitious projects undertaken by TIF, the electronic tools that must be developed are an electronic registry for rare anaemias so that epidemiological data can be gathered, and a disease orientated electronic medical record is compiled. In addition, since TIF is a patient orientated organisation, it has undertaken to develop patient education material to be used through an already existing educational platform (the mEducator).

A New Revolutionary Venture, the TIF video sharing platform for patients… TIF has embarked on a fresh and innovative project with the aim to create a platform that allows thalassaemia patients worldwide to share their stories and experiences with others but also to give a voice and encourage patients to speak out about thalassaemia, thus creating a virtual thalassaemia community on a global scale. With this project, TIF demonstrates its support within the community in order to create awareness about thalassaemia. This programme will initiate a two way interaction between TIF and patients on a global Youtube platform, allowing patients to submit their own videos on a revamped TIF YouTube page and to provide them with an incentive for uploading videos through a contest which will build up to International Thalassaemia Day with the publication of the winning videos.

Renzo Galanello Fellowship - organised by Thalassaemia International Federation in collaboration with the Whittington Hospital NHS Trust, supported by Novartis Pharma We are pleased to inform you that the application period for the Renzo Galanello Fellowship has ended on the 30th November 2013. A total of 18 applications were received from applicants in 11 countries. The Committee is currently in the final stage of reviewing the applications. The successful candidates will be announced shortly. The fellowship will be offered at the Whittington Hospital NHS Trust under the coordination of the Course Director Dr Farrukh Shah, Consultant Haematologist. TIF endeavours to expand the selection of centres of expertise as training centres for the Renzo Galanello Fellowship. We are currently considering the University of Milano Hospital in Milan which also fully complies with the European Criteria for Reference Centres for Haemoglobin Disorders. The training programme has been finalised and the faculty has been selected as per TIF’s aim and focus on learning management of sickle cell and thalassaemia in a clinical setting.

ΜΑΥ 2014 www.thalassaemia.org.cy

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Other News

Calendar

Maria Kastoras

DATE EVENT VENUE nd May 02 2 Ambassadors Circle Nicosia, Cyprus May 04 A walk for thalassaemia - Cyprus Thalassaemia Association Nicosia, Cyprus May 06 Exhibition of drawings for the school-pupils’ contest of the International Thalassaemia Day Nicosia, Cyprus May 06 Workshop on Medical Journalism in the context of the International Thalassaemia Day Nicosia, Cyprus May 06-09 TIF delegation visit to Algeria Algiers, Algeria May 08 Blood donation Nicosia, Cyprus May 08 Press conference for the International Thalassaemia Day Nicosia, Cyprus May 08 School activities (GSC School of Careers Elementary School, English School, Lykavitos Elementary School, Grammar School) in the context of the International Thalassaemia Day, Nicosia, Cyprus Nicosia, Cyprus th May 08-10 7 European Conference for Rare Diseases Berlin, Germany May 09-13 TIF delegation visit to Morocco Rabat, Casablanca, Morocco May 11 Cyprus Thalassaemia Association’s Capacity Building Workshop Nicosia, Cyprus May 21-22 IPFA/PEI 21st International Workshop on ‘Surveillance and Screening of Blood Borne Pathogens’ Rome, Italy May 31 - June 01 TIF Board Meeting London, UK May 31 - June 05 33rd International Congress of the ISBT Seoul, South Korea June 02-06 Eurordis Summer School Barcelona, Spain th June 12-15 19 Annual European Haematology Association (EHA) Congress Milan, Italy

It is with a heavy heart that we learned on Christmas Day of the untimely passing of our dear friend Maria Kastoras. Maria was a pillar of strength in the Thalassaemia community internationally; she was always willing to share information, offer encouragement and break down barriers for those living with this condition. Her infectious smile and laughter touched everyone she met, and was only surpassed by her generous heart and spirit. Maria will be sadly missed all of us. Our love and strength goes to her family and friends near and far. Rest now Maria, and know that you will be in our hearts forever.

Arthur Bank Dr. Arthur Bank, Professor of Medicine and Genetics and Development at Columbia University, and Director of Hematology in the Department of Medicine until his retirement in 2005, died at age 78 at New York Presbyterian Hospital on February 27, 2014. Dr. Bank was a world-renowned molecular biologist and haematologist. Throughout his research career, he authored over 300 publications. His career was unique in that he made major contributions to research both in the area of basic science and that of clinical medicine. After his retirement he wrote two books “Turning Blood Red: The Fight for Life in Cooley’s Anemia,” and “Searching for the Best Medicine: The Life and Times of a Doctor and Patient,” both published by World Scientific Press.

Upcoming International Events

We remember him with great warmth, enduring respect and gratitude for all the advances that he brought forth and for his generous concern for each patient.

ΜΑΥ 2014 www.thalassaemia.org.cy

MAY

JUNE

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Obituaries

COMING TOGETHER

IN THE IRON HEALTH ALLIANCE Novartis Oncology is proud to present the Iron Health Alliance, an initiative dedicated to promoting greater awareness, providing support, and improving overall care for patients with iron overload.

NTDT encompasses several NTDT affects the thalassemic Iron overload develops thalassemia syndromes1,2 belt and beyond2,4,5 over time from two different sources • NTDT refers to a group of thalassemias • The highest prevalence occurs in that require intermittent or no blood transfusions1,2

people from2,4,5 - The Mediterranean - The Middle East

• It ﬁts anywhere between mild to severe on the thalassemia spectrum1,2 Common types of NTDT include : Thalassemia intermedia, HbE/βthalassemia, and HbH/α-thalassemia 2,3

- South and Southeast Asia

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There is a silent threat in the non-transfused thalassemia patient population • Patients with NTDT primarily develop iron overload in the liver through increased gastrointestinal absorption and secondarily through intermittent transfusions8

• NTDT is also becoming more common in the United States and Europe6,7

Look beyond serum ferritin of 800 ng/mL In NTDT, even patients with serum ferritin below 800 ng/mL could be at risk for iron overload9 As iron primarily accumulates in the liver in NTDT patients, high liver iron concentration (LIC) is generally seen with low serum ferritin levels10,11

DIAGNOSTICS

Tools and information about screening and identifying at-risk patients

Novartis Pharma AG CH-4002 Basel Switzerland

ADHERENCE

Patterns in patient behavior and tools to encourage adherence

DISEASE MANAGEMENT

Information on underlying diseases and the complications of iron overload

LIC is a good marker of iron burden and liver MRI should be the preferred diagnostic tool10 References: 1. Taher AT, Porter J, Viprakasit V, et al. Deferasirox reduces iron overload signiﬁcantly in nontransfusiondependent thalassemia: 1-year results from a prospective, randomized, double-blind, placebo-controlled study. Blood. 2012;120(5):970-977. 2. Galanello R, Origa R. Beta-thalassemia. Orphanet J Rare Diseases. 2010;5:1-15. 3. Chen FE, Ooi C, Ha SY, et al. Genetic and clinical features of hemoglobin H disease in Chinese patients. N Engl J Med. 2000;343(8):544-550. 4. Vichinsky E. Hemoglobin E syndromes. Hematology. 2007;79-83. 5. Harteveld CL, Higgs DR. Alpha-thalassaemia. Orphanet J Rare Diseases. 2010;5:1-21. 6. Weatherall DJ. Keynote address: the challenge of thalassemia for the developing countries. Ann NY Acad Sci. 2005;1054:11-17. 7. Weatherall DJ. The deﬁnition and epidemiology of non-transfusion-dependent thalassemia. Blood Rev. 2012;26(suppl 1):S3-S6. 8. Origa R, Galanello R, Ganz T, et al. Liver iron concentrations and urinary hepicidin in β-thalassemia. Haematologica. 2007; 92:583-588. 9. Taher A, El Rassi F, Isma’eel H, et al. Correlation of liver iron concentration determined by R2 magnetic resonance imaging with serum ferritin in patients with thalassemia intermedia. Haematologica. 2008;93(10):1584-1586. 10. Taher A, Musallam KM, Cappellini MD, Weatherall DJ. Optimal management of β thalassemia intermedia. Br J Haematol. 2011;152(5):512-523. 11. Cappellini MD, Cohen A, Eleftheriou A, et al. Guidelines for the Clinical Management of Thalassaemia. 2nd ed. Nicosia, Cyprus: Thalassaemia International Federation; 2008.

July 2013

G-EXJ-1069802

Novartis Pharma Services CH-4002 Basel Switzerland

July 2013

G-EXJ-1069801

You can learn more about NTDT through the Iron Health Alliance at www.ironhealthalliance.com. ΜΑΥ 2014 www.thalassaemia.org.cy

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