March 2015 | Volume 22, Issue 1
Dear Friends,

It is hard to believe that March is already here and spring is right around the corner. Looking ahead, this month is already a blaze of activity and has shaped up to be the most productive month as we continue to prepare for new things to come.

Editorial Team
TIF Around the World

TIF, as the international voice of patients with thalassaemia and other haemoglobin disorders globally, was invited to participate in the Global Iron Summit, which took place between 13-15 March 2015 in Berlin, Germany. More than 450 participants from all over the world have attended this annual event which provides a unique platform for medical specialists dealing with disorders relating to iron depositions in the body to exchange ideas, experiences and knowledge and to be updated on the latest advancements in the field.

TIF’s Executive Director, Dr Androulla Eleftheriou, actively participated in the lively discussions with a particular presence in the session dedicated to the Guidelines for thalassaemia. TIF was also given the opportunity during the Summit to distribute its latest Guidelines for Non Dependant Transfusion Thalassaemia (3rd edition).

TIF’s Photography Contest for the International Thalassaemia Day 2015!

For a second consecutive year, we are proud to announce our International Photography Contest 2015, which has been launched with the aim of creating awareness about thalassaemia in the context of the International Thalassaemia Day.


The deadline for this year’s competition has ended on Tuesday 31 March 2015.


The subject of this year’s photography contest was based on this year’s theme for the International Thalassaemia Day 2015, which is “Enhancing Partnerships Towards Patient-Centred Health Systems: Good Health Adds Life to Years!”

The prizes granted by Thalassaemia International Federation for this competition are the following:

The first winner: $500
The second winner: $300
The third winner: $100

Stay tuned as the winners of this year's photography contest will be announced in early May with the occasion of the International Thalassaemia Day.

A first glance at TIF’s new digital library App!
TIF has undertaken an exciting new project revolving around the development of a mobile application for iOS and Android devices. The move into the mobile space attempts to create a more "immersive" experience for users, providing them with a powerful platform containing all of TIF’s publications and informing them

regarding all of TIF’s events and news. This application enters into the digital age in a very clever and compelling way, offering users a simple way to have their favorite publications available on all of their devices at any place and any time.

It will consist of a digital bookshelf for TIF’s publications and it will enable the users to select a publication, download and read it, providing some stunningly-looking interactive features that harness the touch controls of mobile phones in a sensible and not at all intrusive way.

The application will also allow users to be informed about TI’F’s latest news and planned events through push notifications, alerts, and a digital calendar with all upcoming and past events.

More information will be available in our next updates!

TIF Publications

Out Now!

  • The Guidelines for the Management of Transfusion Dependent Thalassaemia (TDT), 3rd edition  has been released on the NLM Bookshelf’s public site. Please click here to view it. The book’s contents are accessible by search query

  • Translations of Publications
      • Standards for the Clinical Care of Sickle Cell Disease in Adults (2008) in Greek
    • A Guide for the Haemoglobinopathy Nurse (2013) in Greek
      • Emergency Management of Thalassaemia (2012) in Greek
  • Coming Soon!
    Translations of Publications
  • About thalassaemia Cartoon (2010) in Bahasa Indonesian
  • Sickle Cell Disease (2008) in Arabic
  • Emergency Management of Thalassaemia (2012) in French, Arabic, Turkish
  • A Guide for the Haemoglobinopathy Nurse (2013) in Burmese and in Farsi
  • Guidelines for the Clinical Management of Transfusion Dependent Thalassaemia (3rd ed.) (2014), Chinese, French, Arabic, Turkish, Greek.
  • Guidelines for the Clinical Management of Non Transfusion Dependent Thalassaemia, French, Arabic, Turkish, and Greek.
  • Translations of Videos
    • All about Thalassaemia Cartoon Animation (2013) is being translated into Bahasa Indonesian, Malaysian, Chinese, Hindi, Urdu, and Turkish
      • Papers for publication

        • A paper has been submitted for publication named “Thalassaemia Reviews"
      • Another paper about TIF and its role has been prepared by the TIF office to be published in commonly read journals in every region of the world
International News

With immense pleasure we would like to share with that the Greek Thalassaemia Federation is organising the National Event for Thalassemia 2015 which will be held under TIF's auspices in the beautiful city of Kalamata, Greece, and co-organized with the Thalassaemia Association of Kalamata. The event will take place on 8 and 9 May 2015 on the occasion of the International Thalassemia Day.

The event is addressed to all those who have an interest in hemoglobinopathies and primarily aims to better inform them of thalassaemia and Sickle Cell disease as well as its prevention and treatment.

The scientific program of this event is extremely interesting and touches all specialties involved in the treatment of hemoglobinopathies.

This meeting will share knowledge that will contribute to improving the quality of life of people with Thalassaemia and Sickle Cell disease. For more information, please click here.

Research & Therapeutic News

US Food and ‪Drug‬ Administration (‪‎FDA‬) has approved ‪‎JadenuTM‬
We are thrilled to announce that the US Food and ‪Drug‬ Administration (‪‎FDA‬) has approved ‪‎JadenuTM‬ (deferasirox) tablets, a new oral formulation of Exjade® (deferasirox) tablets for oral suspension, for the ‪#‎treatment‬ of chronic iron overload due to blood transfusions in patients 2 years of age and older, and chronic iron overload in non-transfusion-dependent thalassemia syndromes (NTDT) in patients 10 years of age and older. Jadenu is the only once-daily oral iron chelator that can be swallowed whole.
Read more

Study looks at vitamin D deficiency, sickle cell complications
A cross-sectional study followed 95 pediatric sickle cell disease patients while tracking their vitamin D levels and rates of acute sickle vaso-occlusive complications. Among the patients who reported pain, 74% had low levels of vitamin D, according to findings in the journal Pediatric Blood & Cancer. (AABB 3/24)
Read more

Study tests drug for hepatitis C recurrence after transplant
Simeprevir-based triple therapy was associated with undetectable or reduced hepatitis C viral loads among live donor liver transplant recipients with recurrent infections, according to a study in the Journal of Hepato-Biliary-Pancreatic Sciences. The patients received a 12-week regimen of simeprevir, pegylated interferon alfa-2b and ribavirin followed by 36 weeks of dual therapy (AABB 3/25)
Read more

WHO expert panel to consider mass vaccination against Ebola
The World Health Organization's expert advisory panel on immunization could recommend as soon as August whether to commence the mass use of vaccinations against Ebola. "We know the vaccines are safe, we know they produce a good immunogenic response in humans, but we don't know if they are effective when you actually have disease in community," said spokeswoman Margaret Harris of the WHO. (AABB 2/27)
Read more

Animal study explores use of stem-like immune cells in transplants
A study with mice found that infusions of stem-like CD8 T cells can prevent cytomegalovirus infections after bone marrow transplants. Lead researcher Christopher Snyder of Thomas Jefferson University said the findings support the development of clinical trials. The study was published in the Journal of Immunology (AABB 2/24)
Read more

Delegation Visits

Delegation Visits will be announced in our next Newsletter

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.

Mark your calendars for the upcoming International Thalassaemia Day on the 8th of May 2015!


Our website and toolkit for the International Thalassaemia Day have already been launched, fuelling the spirit of this Day!

Preparations have already begun for this year’s International Thalassaemia Day 2015!

TIF offers its annual campaign communication material to help build awareness for thalassaemia. Share it to show your support for our 2015 campaign!

Materials available include:

Official International Thalassaemia Day poster Official International Thalassaemia Day logo

Official International Thalassaemia Day video (coming soon) Website

Email banner

Plan your event!

Associations, organisations, health professionals, and academia are encouraged to share their events with us!

Ignite the spirit of the International Thalassaemia Day as our videos and a detailed plan of activities for May will soon be uploaded on our website and social media!

To find the International Thalassaemia Day campaign kit, please visit our especially created website to honour this day, by clicking here!

TIF’s Educational Programme expanded: The Renzo Galanello Training Fellowship Programme with the support of Novartis Pharma!

General information

TIF has developed, with the support of Novartis Pharma, a fellowship programme in collaboration with the Whittington Hospital NHS Trust in London, UK.

Head: Dr Farrukh Shah, Consultant Hematologist

Duration: The fellowship offers 2 – 4 month support (depending on the level of knowledge and needs) for one or two physicians per year.

Venue: Training Centre: Whittington Hospital NHS Trust at Magdala Avenue, N19 5NF, London, UK.

Starting Period: The course begins each September.


A stipend of $2000 USD/month for each successful candidate, which intends to cover the successful candidate’s accommodation, transportation and other living expenses. Any expenses above this amount will be the responsibility of the successful candidate.

A fee of up to $500 USD for each candidate to the training centre for its administrative needs.

In addition to the above, the Fellowship will cover each successful candidate’s airfare (economy class) to and from his country.

How to apply

The application period will start on 1st of May and end on the 31st of May 2015. The Application Form will be available on TIF’s website and should be completed and returned to the Thalassaemia International Federation, Cypr us , by email at thalassaemia@cytanet.com.cy or tif@thalassaemia.org.cy, or by fax at 00357-22-314552, with the subject line “TIF-Renzo Galanello Fellowship”. In the event you cannot use email or fax, a postal address is denoted on the Application Form.

More details about the terms and conditions, the programme, as well as the application form are available here.

2nd Pan-Asian Conference on Haemoglobinopathies
Vietnam, September 2015

Apply now! TIF's Sponsorship Programme for Patients and Parents now available! Contact thalassaemia@cytanet.com.cy for application forms!


We are delighted to share with you that the Northern

California Comprehensive Thalassemia Centre organised an event titled “4th Annual Health and Community Fair” on 28 March, in Oakland, CA, USA. This event was hosted by the Twenty Pearls Foundation in conjunction with Alpha Kappa Alpha Sorority - Xi Gamma Omega Chapter

During this event, many activities took place such as workshops, free health screenings, and prizes for those who attended. More information here.

This year, Cooley’s Anaemia Foundation (CAF) is organising the “Celebrating Self Empowerment” event from 26 to 28 June 2015, at the Wyndham Hamilton Park Hotel and Conference Center. During this event, CAF will ask patients to submit a photo and enter CAF’s story-telling contest. All the submissions will be published in CAF’s Conference newsletter. In addition, CAF will select one of the submissions received by 6 June 2015 and will ask the winner to share his/her story at the Conference.

Registrations are now open for this event! Deadline is on 7 June 2015. For complete information, please click here

We are pleased to share with you that the “World Cord Blood Congress

V & Innovative Cell Therapies”, organised by the European School of Hematology (ESH) has taken place between 5-8 March 2015, in Monaco. This conference was held under the High Patronage of his Serene Highness Prince Albert II of Monaco and was chaired by E. Gluckman.

The World Cord Blood Congress V has covered a wide range of topics from basic science to clinical aspects including stem cell biology, methods of graft facilitation the and use of cord blood in regenerative medicine, autoimmune and inflammatory disorders.

The programme has included:

  1. Plenary sessions
  2. Discussions and debates
  3. Short oral communications selected from submitted abstracts
  4. Poster sessions
For more information, please click here.

The EHA Scientific Working Group for Red cell and Iron, SWG on MDS and EHA organized a 3-day workshop as an update on the new scientific findings and progress made in translating science into diagnostics, management and novel treatment of patients with red blood cell and iron disorders. The EHA-SWG Scientific Meeting: Red Cell and Iron Disorders, and Myelodysplastic Syndrome (MDS) took place between 6-8 March 2015 In Lisbon, Portugal

The meeting covered all aspects of erythropoiesis and red blood cell disorders – membrane, metabolic and haemoglobin, as well as iron metabolic dysfunction. In addition to plenary lectures from scientists involved at the cutting edge of research, updates on clinical practice and recommendations from internationally recognised experts in the field were included. The clinical case presentations with interactive discussions were presented by delegates and round tables were dedicated to discussion with patient organisations to better understand the currently unmet needs in sickle cell disease and MDS.

The meeting will be designed as a continuing educational event, targeted at physicians and hematologists as well as laboratory scientists.

Participants of this meeting were eligible to receive one Continuing Medical Education (CME) unit for every hour of accredited activity from the EHA-CME system.

A report of this meeting will be published soon. Click here for more information.

European Commissioner for Health and Food Safety visits EMA

The European Medicines Agency (EMA) has announced the first visit of Vytenis Andriukaitis, the new European Commissioner for Health and Food Safety.

Commissioner Andriukaitis will take part in EMA’s celebrations for its 20th anniversary and will take this opportunity to learn more about EMA’s activities, projects and priorities.

2015 not only marks 20 years of EMA and the introduction of a single marketing authorisation for medicines throughout the EU (the centralised procedure), but it also celebrates 50 years of collaboration and harmonisation of the rules and laws that govern the regulation of medicines in the European Union (EU).

During his visit, Commissioner Andriukaitis will also meet with EMA’s senior management to discuss how EU institutions and organisations can best support innovation and shape research and development of medicines so that they deliver real benefits to citizens and support the EU’s capacity to rapidly fight health crises.

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