April 2014 | Volume 12, Issue 1
Dear Friends,
This monthly e-Newsletter provides information on some of TIF's many activities. This month marks the preparations for the International Thalassaemia Day as TIF's activities are blossoming.
Editorial Team
TIF Around the World

The Thalassemia Patients’ Friends Society (TPFS) in Palestine and the National Committee for Thalassaemia Prevention, with the collaboration of the Thalassaemia International Federation (TIF) in Cyprus and the Palestinian Ministry of Health (MoH), have organized the 5th National Palestinian Thalassemia Conference under the theme “Thalassaemia…New Challenges”. This Conference has been held under the patronage of his Excellency the Palestinian Minister of Health, in Ramallah-Palestine, on 07-08 May 2014. This conference has had the national support, commitment and close collaboration of the MoH and its firm determination to improve healthcare in this field, including developping and implementing national prevention strategies for haemoglobinopathies.

TIF has participated in this conference, represented by Mr Riyad ElBard, TIF Board Member, and Dr Michael Aganstiniotis, TIF medical advisor. The 5th National Conference has addressed a series of important matters which included healthcare in Palestine, the role of national institutions when it comes to no new cases of thalassaemia, the psychological and social issues of patients with thalassaemia in Palestine, and patients’ rights.

This conference has greatly contributed to achieving the objective of enhancing the knowledge of local medical and health authorities and gave them the opportunity to meet and network with distinguished experts in the field. It was well-attended (around 400 participants) with wide representation from governmental services, NGO’s, and other stakeholders.

We are pleased to inform you that TIF has participated in the ENERCA Executive Committee Meeting, represented by TIF medical advisor, Dr Michael Agnastiniotis. The ENERCA Executive Committee Meeting was held in Barcelona, Spain, on 30 April 2014 with the purpose of discussing the e-ENERCA project, which started in September 2013.

During this meeting a number of key topics were presented and discussed, including monitoring the progress of the e-ENERCA project, aligning joint efforts, and identifying and planning future action.

The National Health Operations Center (EKEPY) of the Hellenic Ministry of Health has held for the first time an EU High Level Expert Meeting in Athens which was held under the auspices of The Greek EU Presidency and the Hellenic Ministry of Health. TIF, represented by Ms Lily Cannon, European Affairs Officer, has attended the Health Emergency Management Session in the EU Meeting on the role of National Health Operations Centers, which took place on 09-10 May 2014 in Athens.

The purpose of this meeting was not only to discuss but to proceed further to a fruitful exchange of scientific data, experiences and followed practices in the field of emergency management in the Health Sector among experts at an EU level.

For further details, please visit EKEPY’s website.

TIF, represented by Dr Michael Agnastiniotis, TIF Medical Advisor, and Ms Lily Cannon, TIF European Affairs Officer, has participated in the Scientific and Patients/Parents’ Programme of the 7th National Thalassaemia Conference, organised by the National Thalassaemia Welfare Society (NTWS) in New Delhi, India on 19-20 April 2014. This conference was attended by over 300 participants, mostly patients and their parents.

Parallel to this conference, there was a meeting with state coordinators with the aim of finalising the Charter of Priorities that TIF has undertaken to develop for the Ministry of Health and Welfare (Central Government) of India and each one of the participating states. The states covered were Punjab, Haryana, Uttar Pradesh, Maharashtra, Chandigarh, Gujarat and Delhi.

These documents are of vital importance as they will serve as advocacy tools for involved stakeholders to instigate further improvements to the health care services provided to our patients in these States nationally and by extent to hopefully activate other Indian states to follow.

TIF Publications

The following publication has been released in late April:

  • Community Booklets on Haemoglobin disorders: Beta (β) Thalassaemia, Alpha (α) Thalassaemia, and Sickle Cell Disorders, (2014), Dr Androulla Eleftheriou, Dr Michael Agnastiniotis


In the pipeline:

  • The Guidelines for the Treatment of Sickle Cell Disease in adults (2014) has been translated by Dr Demetris Loukopoulos, and Dr Demetris Farmakis and is to be distributed in Greece in the following months.
TIF is delighted to share with you that our cartoon video for the 8th May, 7 Facts about Thalassaemia will be translated in the following languages:
  • Bulgarian
  • Azerbaijani

  • Click here to view the English version!

    International News

    The Thalassemia Association in Nineveh in collaboration with the Guidance Unit of the Science Collegeof the University of Mosul, held a workshop entitled " Thalassemia: pain and hope" on Monday 21 of April 2014 at the Hall of the Faculty of Science at the University of Mosul.

    The workshop was held under the patronage of the Dean of the Science Faculty, of the University of Mosul, Dr. Imad Aldboni. The workshop was attended by a large group of teaching staff and students.

    This seminar was held within the context of the prevention program activities of the Faculty of Science and was supported by the Thalassemia Association of Niveneh, in collaboration with the University of Mosul Committee for the prevention of Thalaessemia.

    Absorbing, original and intense are adjectives used to describe all three of the winning articles awarded at the Award Ceremony of the 5th EU Health Prize for Journalists in Brussels on 8 April 2014. These articles were selected from the over 850 submitted by journalists from across the EU.

    Amidst the shortlist of 28 excellent articles, the winner of the first prize, Henk Blanken from the Netherlands, stood out with his gripping article “Carel’s Head". Second place was awarded to a team of two journalists - Christiane Hawranek and Marco Maurer from Germany. Receiving the third prize was Mette Dahlgaard from Denmark for “Am I Killing Someone?".

    The European Conference on Rare Diseases & Orphan Products has taken place on 8-10 May 2014 - Berlin, Germany. The European Conference on Rare Diseases and Orphan Products is the one event where everyone from patients, to policy makers, healthcare professionals, industry, payers, regulators, researchers and academics are given the opportunity to meet, exchange information and ideas and join together in the fight against rare diseases.

    The Regional Multan Center of Punjab Thalassaemia Prevention Program (PTPP) has organized an awareness activity on 5 March 2014 at the Kabirwala Campus of the Virtual University of Pakistan with the main objective of raising awareness about Thalassaemia Prevention.

    Dr. Shahid Hafeez (RC Multan PTPP) was the main facilitator of this session. Students and faculty members have attended this session and were informed about thalassaemia and its pattern of inheritance.

    Other Community awareness sessions were also arranged in the district Khanewal.

    8th of May 2014 - International Thalassaemia Day!

    Stay tuned for May’s Newsletter to find out more about TIF’s activities and events for the International Thalassaemia Day, honoured each year on 8 May. A few of these activities include:

    • Ambassadors' Circle - Second Meeting
    • Press Conference in Cyprus (TIF Headquarters)
    • Project 8: "Red Day" - School Activities and Educational Visit in Cyprus
    • Drawing contest in Schools in Cyprus
    • International Photography Contest
    • Journalist Workshop
    • You will read more details about these activities in our special May Newsletter, which will be dedicated to the International Thalassaemia Day!

    TIF will participate in the Patient Advocacy Session of the 19th Annual Congress of the European Haematology Association (EHA) to be held on 12 - 15 June 2014 in Milan, Italy. This session is dedicated to patient organizations who work together to advocate issues of common interest in the field of haematological diseases. TIF represents of course the non-malignant part of haematology. Furthermore, TIF's participation at this important conference will be focused on the distribution of TIF's Educational Material at a dedicated exhibition booth.

    TIF Magazine

    Our latest issue of the TIF Magazine is out and has been distributed to over 56 countries of the world. You can browse through its pages by clicking here.

    TIF video sharing platform for patients
    TIF has embarked on a new project with the aim of creating 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 platform 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 World Thalassaemia Day with the publication of the winning videos.

    Alongside its patient expert training programme, the patient-led European Patients’ Academy (EUPATI) has set out to inform the European patient community on how the medicines research and development process works. TIF has attended the EUPATI 2014 Workshop, represented by Ms Lily Cannon, TIF European Affairs Officer, which has taken place on the 2 April 2014, in Warsaw, Poland.

    More than 150 representatives from patient organisations, academia, industry and regulatory affairs met in Warsaw. Participants discussed the next stage of the ambitious EUPATI project aimed at increasing the knowledge of the lay public about the development process of new medicines. Many not present in Warsaw also followed the discussions live via Twitter. The input received at the workshop was invaluable and will help shape the project's strategy.

    Here you find the press release, all presentations and films shown during the EUPATI 2014 Workshop, as well as the Social Media wall covering the event.

    European Parliament Elections!
    We are delighted to announce that Dr Androulla Eleftheriou, TIF Executive Director, has been nominated as a candidate for the upcoming European Parliament Elections, which will be held in all Member States of the European Union (EU) between 22 and 25 May 2014. Dr Eleftheriou’s nomination provides an excellent and unique opportunity to highlight through the mass media and other official channels, issues concerning thalassaemia and other Hb disorders in Europe but also worldwide.

    The Punjab Thalassemia Prvention Programme (PTPP) and the Pakistan Academy of Family Physicians (PAFP) have joined hands working together to prevent Thalassaemia. In this regard, the Project Director of PTPP has presented an overview of the organisation at theFAMILYCON Conference, which took place on 9 March 2014, in Pakistan.

    Over 1000 doctors from different parts of Pakistan have attended this conference. A fruitful collaboration has been initiated between PTPP and PAFP during this event.


    Research & Therapeutic News
    Βluebird bio Announces First Patient Transplanted in Phase 1/2 Northstar Study for the Treatment of β-Thalassemia (ITHANET 28/03/2014)
    A late-stage trial showed Bristol-Myers Squibb's hepatitis C combination therapy daclatasvir and asunaprevir cured 90% of previously untreated patients with genotype 1b virus after 24 weeks of therapy. The drug also cured 82% of patients who couldn't tolerate interferon and ribavirin, the older standard treatments for the disease (AABB 14/04/2014)

    Ongoing hepatitis A outbreak in Europe 2013 to 2014: imported berry mix cake suspected to be the source of infection in Norway (Eurosurveillance, 17/04/2014).
    Nonmyeloablative Peripheral Blood Mobilized Hematopoietic Precursor Cell Transplantation for Sickle Cell Disease and β-thalassemia in People With Higher Risk of Transplant Failure (ITHANET, 22/04/2014).
    Unrelated Umbilical Cord Blood Following HLA-haploidentical Hematopoietic Stem Cell Transplantation in Patients With β-thalassemia Major (ITHANET, 13/04/2014).

    Mast Therapeutics presented data from a study of MST-188, a drug for treating vaso-occlusive crisis, a complication of sickle cell disease (AABB 16/04/2014)

    Experimental therapies, growing research investment and a renewed focus on sickle cell disease have emerged in an effort to find a curative treatment for the disease (AABB 25/04/2014)

    Delegation Visits
    See our next issue for delegation visits that are to take place


    Keep Us Updated!
    TIF encourages all its members to update their websites! We plan to upload your news and activities regularly and we will project important information from your Associations' websites.

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