January 2015 | Volume 20, Issue 1
Dear Friends,

As 2015 unfolds, a new chapter begins while we embrace our journey, establish new goals, finalise our plans, and set out for new endeavours! During this time of new beginnings, we hope you will stay connected with us and help us shape the future of our new chapter!

Editorial Team
TIF Around the World

Health Professionals from around the world came together in Barcelona, Spain to attend the Training course on haemoglobin disorders organized by European School of Hematology (ESH) – ENERCA, held on 23-24 January 2015. TIF represented by its medical advisor, Dr Michael Angastiniotis participated in the workshop programme with a lecture on Prevention programmes for thalassaemia and sickle cell disease, focusing on case study countries, and the role of patient-parent Associations.

This initiative intended to promote interaction and ample discussion between scientists and clinicians working in the health field. Scientific presentations were given by international leaders who provided the current state of the art and future perspectives of the many exciting developments in the field. Results from both basic and clinical research have been presented in the different sessions of the programme.

During this meeting among the number of key topics presented and discussed, were the epidemiology, screening and prevention of haemoglobinopathies, new clinical and biological aspects of thalassaemia, new and future trends in this field, the laboratory diagnosis of thalassaemia syndromes and the complications and treatment of abnormal haemoglobins.

TIF embraced and supported an initiative of vital importance by attending a workshop on the topic of patients' participation in health policies and decision making. This meeting entitled "Development Plan for patient involvement in Health Policy making" took place on Friday, 16 January 2015 in Nicosia, Cyprus, and was organized by the Pancyprian Federation of Associations of Patients and Friends (POSPF). On behalf of TIF, Dr Androulla Eleftheriou, Executive Director, played an active role in this workshop

The workshop was marked by the intensive participation of distinguished medical professionals as well as patients in discussions which revolved around health policy decision-making and the implementation of the new General Health Plan in Cyprus. Additionally, the workshop served as a forum for the official presentation of the survey results conducted among organizations seeking to investigate patients’ views on this subject.

The wide-reaching participation of these stakeholders and members of organizations was very important in shaping the discussion and helping in achieving the workshop objective.

In continuation of a joint effort to shape the direction of rare diseases in Cyprus with regard to the implementation of the Cyprus National Health Plan, two key meetings were held in which TIF participated representing the Cyprus Alliance for Rare Diseases (CARD), of which TIF is a founding member. These meetings were held at the TIF headquarters in Nicosia, Cyprus, on 02 January 2015 and on 12 January 2015 respectively and were attended by the members of the C.A.R.D which consist of individual Patient Organisations for Rare Diseases across Cyprus. 

The discussions revolved mainly around the
realignments currently taking place in Cyprus regarding two pieces of legislation which have been submitted by the Cyprus Ministry of Health to the Parliament of Cyprus for ratification and concern the National Health Plan in Cyprus and the establishment of General Hospital Institutions.

On the occasion of these developments, organisations such as the Cyprus Alliance for Rare Diseases and TIF must join together to have their say and voice their concerns in order to maintain or to advance the quality of care received by patients with rare diseases such as haemoglobinopathies, as they too are amongst the family of rare diseases in Europe and globally through the EC Communication on Action in the field of Rare Diseases, 2009/C 151/02.

TIF and other Patients’ Organisations for Rare Diseases are moving things forward with the submission a consensus document comprising their thoughts and concerns around the National Health Plan in Cyprus and rare diseases.

In early January TIF, represented by Dr Androulla Eleftheriou, Executive Director, has virtually attended a meeting which formed part of a project known as the Adaptive Licensing Pilot Project, and which took place on 7 January 2015 at the European Medicines Agency (EMA).

Adaptive licensing revolves around the early authorisation of a medicine in a restricted patient population, collecting evidence in this group and then adapting the marketing authorisation to allow a broader patient population to access the medicine.

This pathway of Adaptive Licensing involved multiple stakeholders who contributed to the discussion on the design of development programs. These stakeholders included both payers and patients whose input on the proposed design and timing of the clinical trials, was sought for and gathered.

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

  • Publications
  • Guidelines for the Clinical Management of Transfusion Dependent Thalassaemia (3rd ed.) (2014). (English)

    • 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
    • A Guide for the Haemoglobinopathy Nurse (2013) in Burmese and Farsi.
  • About thalassaemia Cartoon in Bahasa Indonesian

  • Translations of Videos
    • All about Thalassaemia Cartoon Animation (2013) is being translated into Bahasa Indonesian, Malaysian, Chinese, Hindi,
      and Urdu
      • 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

In the context of an initiative aiming to make rare diseases more visible, the 1st International Congress on Clinical Genetics and Genetics Counselling in Rare Diseases, is organised by genetic insidER and Cabana Genetics.
Official languages: Spanish/English (all sessions will have interpretation into English and Spanish)

Please read the Conference Programme here

Get Involved: Patient Training on Medicines Research and Development!
The application process is now open for the 2015 – 2016 Patient Training on Medicines Research and Development! The deadline for submitting applications is 31 March 2015 (23:59 Central European Time). 

The EUPATI Expert Training Course is an exciting and unique opportunity offering patients and patient advocates expert-level training in medicines research and development. The Course is a mixture of independent e-learning coursework and face-to-face training events over a 14-month period. The first Course cycle kicked off in October 2014 and will run until December 2015.

Upon completion of the Course, trainees will have the knowledge to make meaningful contributions to patient empowerment and advocacy and to contribute to the broader dialogue on patient involvement in medicines research and development across Europe. 

Further information on the application process can be found on this website.

The Registration for the Cooley's Anemia Foundation 2015 Care Walk Is Now Open! Care Walk is the Cooley's Anemia Foundation's annual fundraising event and opportunity to bring together the thalassaemia community and its supporters around the country. The Care Walk on May 3, 2015 will raise funds to fight thalassaemia!

Care Walk is unique because it offers  flexibility: Participants may attend an already organized Walk or they may determine where they want to walk and plan an event that works for them! Join Cooley's Anaemia Foundation on May 3 2015!

More information and to register, click here

The ENERCA White Book is available NOW!
Developed as a deliverable of the ENERCA 3 project, The ENERCA White Book is a position paper that intends to contribute to the creation of a European Reference Network in Rare Anaemias (ERN-RA) by preparation of the recommendations and, in particular, the definition of the criteria that Centres of Expertise (CoE), local centres (LC) and their interrelations have to fulfil as healthcare providers. It has been nourished by all the activities that have been performed over the past ten years within the ENERCA framework.

The White Book is addressed to authorities in charge of the identifying CoE, as an essential requirement for the official recognition of the European Reference Networks, to European and national health authorities, Healthcare centres and health professionals, as well as to all other stakeholders interested in Rare Anaemia. It is also addressed to the patients, as a way to empower their community in this process.

To read the paper, click here.

As a result of the joint efforts of TIF and involved stakeholders in the country, important progress has been made in Azerbaijan:

According to information from the Central blood bank, about 1400 patients with thalassemia are on permanent transfusion and are supplied with donor blood by the Blood bank.  Main treatment patients receive in the Republican Centre of Thalassemia in Baku. More than 800 patients are registered in the Centre (those receiving permanent transfusion there). There are also divisions of the Blood bank in 7 regional centers of Republic.

Since May,  2014 transplantations of bone marrow  are done in the Centre of Thalassemia. 9 minors were successfully operated in 2014. Government meets all costs of operations.

Congratulations to our members in Azerbaijan for all the work accomplished and although there is still a long way to go, we are confident that things will move forward in a fast pace.

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 8th of May 2015 - International Thalassaemia Day!
Preparations have already begun for this year’s International Thalassaemia Day 2015!

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

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)
  • Email banner

Plan your event!
Associations, organisations, health professionals, and academia are encouraged to share their events with us!
Stay tuned with 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!

We are delighted to share with you that TIF has  virtually attended the launch of the second WHO Global Status Report on NCDs (2014) entitled “Attaining the nine global NCD targets: a shared responsibility”, which has taken place on 19  January 2015, in Geneva.

The first WHO Global Status Report on NCDs (2010) was launched at the 1st Global Ministerial Conference on Healthy Lifestyles and Non Communicable Diseases (NCD) Control in Moscow, between 28-29 April 2011.  This report provided the foundation for advocacy, policy development and global action based on scientific knowledge, available evidence and a review of international experience, framed around the six objectives of the WHO Global NCD Action Plan 2008-2013. It provided data on the situation in 2008.

The second Report was framed around the nine global targets for NCDs to be attained by 2025 against a baseline in 2010. It has provided guidance on how Ministries of Health can set national NCD targets, and lead the development and implementation of policies and interventions to attain them.

The meeting was effective in conveying the key messages of the report which were presented. Speakers during the launch event have included the WHO Director-General, Dr Margaret Chan, Ambassadors from Permanent Missions in Geneva, as well as panellists from the NCD Alliance, the International Olympic Committee, the World Economic Forum, the University of Lausanne, and United Nations Development Programme (UNDP).

TIF's Photography Contest for the International Thalassaemia Day 2015 is set to begin! 
For a second consecutive year, we are proud to announce our 2nd International Photography Contest 2015 which is launched with the aim of creating awareness about thalassaemia, in the context of the International Thalassaemia Day, honoured each year on May 8.

Participation in this contest is open for all ages, and all countries across the world!
The deadline for the competition is Tuesday, 31 March 2015.

The subject of this drawing contest is based on this year’s theme for the 22nd International Thalassaemia Day , which is "Enhancing partnership 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
All others will be given a certificate of participation.


Submissions should be sent to thalassaemia-lp@thalassaemia.org.cy with the name and surname of the participant as well as the title of the photography contest in the subject of the email.
For further clarifications, please contact Thalassaemia International Federation (TIF) at thalassaemia-lp@thalassaemia.org.cy or 00357 22 319 129

Click here for the Terms and Conditions of this contest.
Click here for the FAQ section.
More information has been uploaded on our website

Send us your photograph!

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

Sponsorship Packages now available!

TIF’S Educational Programme expanded! 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

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

: Training Centre: Whittington Hospital NHS Trust in London, UK, 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, Cyprus, 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 application, as well as the programme are available here.


Obama’s Precision Medicine Initiative: What It Means for Orphan Drugs

In his State of the Union (SOTU) address which took place on 21 January 2015 at the World Orphan Drug Congress USA, President Barack Obama brought personalised medicine to the forefront.

Personalized medicine is the direction many people believe the industry is heading – medications specifically tailored to the individual based on their genome. This is important in the rare disease field, which also encompasses thalassaemia. To be able to alter treatment types and doses based on the specific gene makeup of the patient will reduce off-target effects and increase efficacy.

Precision medicine, on the other hand, is less about the individual and more about pathways. It allows for that same specificity people seek in personalized medicine, but without the added constraint of requiring and individual genome to make it happen.

European Federation of Nurses Associations (EFN) and International Federation of Social Workers (IFSW) Presidents, Marianne Sipilä and Cristina Martins jointly met the European Commissioner for Health, Dr Vytenis Andriukaitis from Lithuania on 19 January 2015.

Among the issues discussed were eHealth services in nursing and social care and evidence-based reforms in health systems for policy-makers & politicians. Finally, patient safety & quality of care, including the workforce needed in the health and social care sector, became a priority in the political exchange of views between the Commissioner and both IFSW and EFN.

The Commissioner stressed the importance of mutual recognition of professional qualifications and the key challenges of brain drain. He also underlines that without appropriate stakeholder engagement, there will be no successful policy outcomes and no trust built among EU citizens.

Want to learn about new scientific findings and progress made in translating science into diagnostics, management and novel treatment of patients with red blood cell and iron disorders? Join the EHA-SWG scientific meeting on red cell and iron disorders & myelodysplastic syndrome (MDS) which is aimed towards physicians, hematologists and laboratory scientists!

Dates: March 6-8, 2015
Location: Lisbon, Portugal
Language: English

Registration is now open and the deadline for early registration is 31 January 2015. EHA members benefit from a € 75 discount on the registration fee. 

For more information on the program and registration, click here.

It is time for the 11th annual Iron Warriors® Art Contest! Here’s your chance to show off your creativity! The purpose of the contest is to raise awareness about Thalassaemia and the importance of treatment compliance for everyone, and to give you a chance to show off your artwork. We would like you to draw or paint your own original picture using the following themes: 
‘Iron Warriors’. 

What else do you need to know?

8 ½” x 11”, and a maximum size of 11” x 17”. Artwork should be displayed lengthwise (landscape). 
You can use crayons, pencils, paint, pastels, or anything you like.
You must submit your artwork to the address listed on the waiver form by Friday 27th February, 2015! 

Click here for more information.

Good Luck and Have Fun!

Research & Therapeutic News

New York Government funds stem cell research
New York Gov. Andrew Cuomo has announced funding for research into stem cell therapies for sickle cell anemia, blood cancer and ovarian cancer (AABB 12/01/2015)
Read more

Pre-transplant sofosbuvir and ribavirin prevent hepatitis C recurrence in study
Patients with hepatitis C who were on transplant waiting lists received sofosbuvir and ribavirin for up to 48 weeks. After transplant, 70% achieved virologic response at 12 weeks, 23% developed recurrent infections and 7% died.(AABB 12/01/2015)
Read more

Researchers develop biochip to assess sickle cell disease
Researchers at University Hospitals, Case Medical Center and Case Western Reserve University have developed and begun testing a biochip that evaluates sickle cell disease activity by measuring the flow of red blood cells. (AABB 23/12/2014)
Read more

WHO announces changes to improve response to future outbreaks
World Health Organization Director-General Dr. Margaret Chan said the agency fell short in responding to the Ebola outbreak, including the initiative includes the creation of a $100 million contingency fund and the hiring of additional disease response workers (AABB 25/01/2015)
Read more

Treatment of Hemoglobin Sickle Cell Disease
Research study conducted to see if hydroxyurea, a medication given to many children with the most common type of sickle cell, HbSS, helps children who have HbSC, by giving a questionnaire when the medication is started, and then each month at a clinic visit. The questionaire, called the PedsQLTM 3.0 Sickle Cell Disease Module, measures quality of life (ITHANET 09/01/2015).
Read more

Decision Aid for Therapeutic Options In Sickle Cell Disease
Project launched aiming to develop and implement a web based decision aid individualized to patient characteristics to help patients with sickle cell disease achieve more accurate perception of risks and benefits of treatment options and make decisions in congruence with their values and preferences (ITHANET 09/01/2015).
Read more

Reproductive Capacity and Iron Burden in Thalassemia
Research conducted to examine measures of fertility potential, and correlate them to their current iron burden parameters and to the cumulative iron effect as indicated by past iron overload patterns and chelation history (ITHANET 09/01/2015).
Read more

Sickle Cell Hemoglobinopathies and Bone Health
Research study with the double purposes of determining whether having sickle cell trait (SCT) is a risk factor for the development of bone thinning at an earlier age than expected and understanding why individuals with sickle cell disease (ITHANET 09/01/2015).
Read more

Decision Aid for Therapeutic Options In Sickle Cell Disease
Project launched with the overarching goal to develop and implement a web based decision aid individualized to patient characteristics to help patients with SCD achieve more accurate perception of risks and benefits of treatment options and make decisions in congruence with their values and preferences.
Read more

FDA approves pathogen-reduction system for use with platelets
Cerus' Intercept Blood System has been approved by the FDA for use with platelets collected through apheresis (AABB 18/12/2015).
Read more

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