February 2014 | Volume 10, Issue 1
Dear Friends,
Welcome to our latest issue of TIF's e-newsletter! February has ended on a very high note with TIF's successful delegation visit to Iran for the training of Afghani specialists but also with TIF's many exciting activities around the world. This month's issue includes further details about the preparations for the 8th of May which have already begun and many more interesting news. We hope you will enjoy this edition of our Newsletter, and we look forward to the exciting agenda of March!
Editorial Team
TIF Around the World

TIF Medical Advisor, Dr Michael Angastiniotis, attended a Workshop in Shiraz, Iran, on behalf of Thalassaemia International Federation, conducted for the training of medical specialists from the neighbouring country of Afghanistan, on 05-06 February 2014 , after being invited to contribute to this Symposium. The workshop was organized by Prof. Mehran Karimi, Director of the Shiraz Hematology Research Center in collaboration with TIF distinguished Board Member and chairperson of the Charity Foundation for Special Diseases (CFFAD), Mrs Fatemeh Hashemi.TIF's Medical Advisor, Dr Angastiniotis, participated in this workshop and had the opportunity to meet with Afghani officials and prominent medical specialists to discuss the creation of services focusing on thalassaemia in a country (Afghanistan) where such services do not exist.

Furthermore, before the symposium, TIF's delegate had the excellent opportunity to attend a very important meeting in Tehran with public health and other officials from the Iranian Food and Drug Organization (FDO), the Iranian Blood Transfusion Organization (IBTO), the Center of Special Disease of the Ministry of Health (CSD-MoH), as well as key medical specialists, where the following problems of the Iranian thalassaemia community.

TIF's delegate also visited the headquarters of one of TIF's member associations in Iran, the Iranian Thalassaemia Society (ITS), where discussion evolved around the need to increase the supplies of drugs, to increase the subsidy of Exjade, and to provide it free of charge to patients. The need for FDO to look into the quality of drugs that are produced in Iran for thalassaemia patients was also among the topics discussed.

In view of strengthening the cooperation with TIF's member association in Vietnam, the Vietnamese Thalassaemia Association (ViTA), TIF is planning a delegation visit in Vietnam on 4-7 March 2014, following an invitation from ViTA in order to discuss further joint action. ViTA has also organised a meeting with the health authorities of Vietnam (Ministry of Health) that will take place in the course of this visit.

During this preliminary visit in early March, TIF will set the ground for a parallel meeting to the 12th Association of South East Nations' (ASEAN) 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 Association for the Southeast Asian Nations (ASEAN) and towards initiating a collaboration with the Health Ministries of these states for the establishment and improvement of control programs for thalassaemia.

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 will organize a side-meeting, inviting Health Ministers of important ASEAN Member states, key medical specialists and other influential officials, for a productive discussion of avenues with which TIF can raise the profile of thalassaemia in the health agendas of these countries and assisting them in implementing effective prevention and adequate management programs for thalassaemia.

TIF has registered and will be participating at the 6th Global Patients’ Congress of International Alliance of Patients Organisations (IAPO), on 28-30 Mar , in London, UK. TIF’s Executive Director, Dr Androulla Eleftheriou has been part of the Advisory Committee through the organizational phase of this Congress.

The 6th Global Patients Congress will bring together expertise and experience in how to build patient-centred healthcare globally. The Congress provides a global platform for high level policy debate, knowledge and skills building and opportunities for exchange and networking. The theme of the 6th Global Patients Congress is: Better access, better health: A patient-centred approach to universal health coverage.

We are delighted to share the Programme for the 6th Global Patients Congress, where you can find the session details, more information on what to expect from the Congress as well as how you can attend.

TIF Publications

The National Library of Medicine (NLM) of the National Institute for Health (NIH) in the USA has accepted the following TIF publications for online publication.

  • Prevention of Thalassaemias & Other Haemoglobinopathies, Vol. 1: Principles, 2nd Edition, 2013. (Old, J., Angastiniotis, M., Eleftheriou, A., Galanello, R., Harteveld, C.L., Petrou, M., & Traeger-Synodinos, J.)
  • Prevention of Thalassaemias and Other Haemoglobin Disorders, Vol. 2: Laboratory Protocols, 2nd Edition, 2012. (Old J, Harteveld C L, Traeger- Synodinos J, Petrou M, Angastiniotis M, Galanello R.)
  • Guidelines for the Management of Non Transfusion Dependent Thalassaemia (NTDT), 2013. (Taher, A., Vichinsky, E., Musallam, K., Cappellini, M.D., Viprakasit, V.)
  • Emergency Management of Thalassaemia, 2012. (Porter J, Taher A, Mufarij A, Gavalas M.)

It expected that these will be online in the next few months.

Regional News
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 governance of Nineveh on 13-14 of February 2014. The number of participants of the camp reached over 65 included doctors from the Thalassemia Center and Thalassemia patients and their friends and family from the Mosul University / College of Administration and Economics. The slogan for the first Spring Camp of Thalassemia is "Our future is beautiful".

The next EPHA Policy Coordination Meeting (PCM) will take place on Thursday, 13 March from 12:30 to 15:30 in  Brussels.
This meeting will be divided in three thematic blocks - 1.) health determinants, 2.) EU affairs developments relevant for health, and 3.) health systems - that interest them, with short breaks in between sessions during which members will be free to join / dial-in or leave the room, depending on their preferences.

Please find the draft agenda for this meeting, on the members' only part of the EPHA website.

A new platform launched by the European Commission will improve the safety of patients that undergo medical treatment involving blood and blood products.

From 06 February 2014, national health authorities can use the web-based Rapid Alert system for Blood and Blood Components (RAB) that allows them to exchange information so that cross-border incidents are prevented or contained and immediate measures can be taken to ensure the safety of patients. RAB will be used in parallel with existing national vigilance systems which collect and manage the alerts related to blood donated and used in the same Member State.

Due to the high volume of blood donated and transfused every year in the EU - more than 24 million units of blood and blood components were issued and over 2 million patients were transfused in 2011 alone - vigilance of all blood and its components transmitted across borders is of great importance. RAB supports this by allowing quick communication of the information needed for national authorities to take appropriate measures.

8th of May videos! TIF has undertaken two exciting projects which involve the creation of the following two videos!

  • 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.
  • A Video about TIF and Thalassaemia in Cyprus: An International Thalassaemia Day Video about thalassaemia in Cyprus which will include a message for the 8 of May 2014 from TIF President, Mr Panos Englezos.

    Both of these videos are expected to be finalised before the International Thalassaemia Day 2014.

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

The Thalassaemia International Federation (TIF), in collaboration with the Greek Thalassaemia Federation, is proud to announce that the 4th Pan-European Conference on Haemoglobinopathies & Rare Anaemias will take place on 07 – 09 November 2014, at the Titania Hotel, Athens, Greece. We extend our invitation to all the thalassaemia community of doctors and patients with great enthousiasm! Stay tuned! Α detailed announcement of the Conference will soon be available on our website.

It is with great pleasure that we announce to you that TIF will be participating at the 16th International Haemovigilance Seminar (IHS) , to be held in Barcelona on 5 to 7 March 2014. The Board of the Spanish Society of Blood Transfusion (SETS) in collaboration with the Board of the International Haemovigilance Network (IHN) will organise this meeting and elaborate the scientific programme. The meeting also has the support of the Spanish Ministry of Health and the Health Department and the Blood Transfusion Centre in Catalonia. During the course of this meeting, various aspects related to Haemovigilance will be covered in the context of blood donation and blood donors, blood processing, blood transfusion and optimal blood use, as well as new subjects.

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 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. TIF's participation at this importance conference will be focused on:
  • The distribution of TIF's Educational Material at a dedicated exhibition booth.
  • The launching of the new Guidelines for the Clinical Management of Transfusion Dependent Thalassaemias with extensive distribution to haematologists, official press release etc.
With reference to the Resolution of WHO EB118.R1 requesting the Director General to consider having a World Health Day on haemoglobinopathy diseases such as thalassaemia and sickle-cell anaemia, TIF has requested from WHO to support TIF's initiative to recognise and establish the International Thalassaemia Day on the 8th of May each year.

In this context, there is a communication between TIF and WHO on the official procedure that needs to be followed, in order for WHO to recognise the 8th of May as the International Thalassaemia Day. While in anticipation of official recognition by the WHO, TIF will continue to celebrate the 8th of May as the International Thalassaemia Day.
28 February 2014 marks the seventh international Rare Disease Day, an annual, awareness-raising event co-ordinated by EURORDIS at the international level and by National Alliances and Patient Organisations at the national level. This year the theme is Care – let’s Join Together for Better Care!
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
The campaign targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.


Research & Therapeutic News
CD34+ (Malignant) Stem Cell Selection for Patients Receiving Allogenic Stem Cell Transplant
Study to offer treatment involving the use of a Miltenyi CliniMacs CD34+ selection device to remove T-cells from a peripheral blood stem cell transplant in order to decrease the risk of acute and chronic GVHD. (ITHANET 11/02/2014 )

Propanolol and Red Cell Adhesion Non-asthmatic Children Sickle Cell Disease
Pilot study  to administer one dose of propanolol to children with sickle cell disease and to measure pre and post dose red cell adhesion. The hypothesis is that a single dose of propanolol will decrease red cell adhesion to laminin and endothelial cells as compared to baseline (ITHANET 17/01/2014).

Study of Efficacy and Safety of INC424 in Regularly Transfused Patients With Thalassemia.
Preliminary preclinical and clinical data suggest that JAK2 inhibition, by reducing spleen size, may improve hemoglobin levels, thereby eliminating the need for splenectomy and reducing transfusion requirement and related iron overload (ITHANET 28/01/2014).

Prediction of Maximum Tolerated Dose for Hydroxyurea Treatment in Sickle Cell Disease
Research study conducted to compare predictive equation to the current standard practice of gradual dose escalation and to determine if the equation allows to achieve MTD faster and with no more adverse effects than are seen with the dose-escalation method (ITHANET 20/01/2014).

Efficacy and Safety of Ferriprox® in Patients With Sickle Cell Disease or Other Anemias (FIRST)
Research conducted to look at the safety and efficacy of deferiprone in people with sickle cell disease or other anemias and compare deferiprone with deferoxamine, another drug that removes iron from the body (ITHANET 15/01/2014).

Allograft for Sickle Cell Disease and Thalassemia
A phase II study is underway to determine the safety and therapeutic potential of a new transplant approach (disease-free survival, graft versus myeloma effect) and to evaluate its toxicity profile (immediate toxicity, graft-versus-host disease, graft rejection, mortality) in a patient population with severe congenital anemias (ITHANET 10/01/2014).
Delegation Visits
Vietnam - March 2014

*These dates are subjects to change according to local circumstances*

Keep Us Updated!
TIF has embarked on reviewing all its members' websites!. We plan to upload your news and activities regurarly and we will project important information from your Associations' websties.

© 2014 Thalassaemia International Federation. All Rights Reserved. Click to Unsubscribe