January 2014 | Volume 9, Issue 1
Dear Friends,
A new year is upon us and a busy agenda awaits us! With this month's issue, we are thrilled to present to you our newsletter's new format, stylish appearance and updated content. We hope you find it insightful and interesting. We look forward to sharing an active, productive 2014 together with all our friends in the thalassaemia community.
Editorial Team
TIF Around the World

With the aim of promoting the self-management of patients with Thalassaemia, TIF has organized an Interactive Workshop on Thalassaemia on 25 January 2014, in Limassol, Cyprus. This initiative constitutes part of TIF's 'Expert Patients Programme' aiming to enhance the patients' existing knowledge around the topic of treatment protocols. This program has already been implemented in many countries of the world and in each country it is specially tailored to meet the patients' needs and their level of knowledge.

International Experts, Dr. Ali Taher, Dr. Maria. D. Cappellini and Dr. John Porter visited Cyprus to review the "Guidelines for the clinical management of Transfusion Dependent Thalassaemia." In the context of their visit, TIF and the Cyprus Thalassaemia Association co-organized an interactive discussion with a question and answer session with the patients, on 17 January 2014, at the Institute of Neurology and Genetics in Nicosia. During the interactive debate, the foreign experts spoke about vital issues relating to thalassemic patients.

The 2nd Pan-South China Workshop on Haemoglobinopathies, organised by TIF, took place on 10-11 January 2014, in Guangzhou City, Guangdong Province, China. This workshop focused on the specific needs and challenges China faces regarding the management of Hb disorders, in particular thalassaemia, thus taking forward the previous work done in China. The workshop aimed to support in as many ways as possible patients with Hb diseases in the southern provinces of China where β-and α-Thalassaemia syndromes are most prevalent. The integration of national policies on haemoglobin disorders in China needs to be prioritised and further promoted into other relevant policies and programmes of the Government and Health Authorities of this country. We are confident that TIF's ongoing efforts to that end will make a considerableimpact in the future.

In the context of TIF's interest in supporting the adoption and implementation of international guidelines regarding thalassaemia and sickle cell disease, TIF has issued a position paper on Sickle Cell Disease in Greece. With this position paper, TIF seeks to prompt the Ministry of Health to support and strengthen Hospital Units monitoring patients with SCD, and to implement the international guidelines for the treatment of sickle cell disease in patients in each unit. In addition, the paper promotes the education of emergency departments about the possible complications that may be encountered in patients with SCD.

TIF considers the intervention of the Greek Ministry of Health of vital importance for the implementation of the guidelines in order to appropriately inform the medical and paramedical community about the proper and timely diagnosis, monitoring, and clinical management of this disease.

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 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 Donors, the European School of Transfusion Therapy, the International Heamovigilance 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.

Haemochromatosis patients are excluded in many 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 our patients.

TIF Publications

The "Guidelines for the clinical management of Transfusion Dependent Thalassaemia" have been revised by international experts, Dr. Ali Taher, Dr. Maria. D. Cappellini, Dr. John Porter, Dr. Vip Viprakasit, TIF's executive Director, Androulla Eleftheriou, and TIF's medical advisor, Michael Angastiniotis. The guidelines are expected to be released by the end of May.


The animated cartoon "All about Thalassemia" has now been dubbed in Arabic! Click this link to watch.

We are excited to announce that the following publications are now availiable as flip-books on our website!
  • Prevention of Thalassaemias and other Haemoglobin Disorders, Vol 1 and 2, 2nd Edition (2013) - Old J, Galanello R, Eleftheriou A, Traeger-Synodinou J, Petrou M, Angastiniotis M
  • Guidelines for the Clinical Management of Non-Transfusion Dependent Thalassaemias(2013)- Cappellini M D, Taher A, Musallam K
  • A Guide for the Haemoglobinopathy Nurse (2013) - Aimiuwu E, Thomas A, Roheemun N, Khairallah T, Nacouzi A N, Georgiou A, Papadopoulou C
  • Emergency Management of Thalassaemia (2012) - Porter J, Taher A, Mufarij A, Gavalas M

  • Click here to view them!

    Regional News
    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, the Khyber Pakhtunkhwa Province, in Pakistan on the 19th 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.

    Five global healthcare organizations have established a Consensus Framework for Ethical Collaboration on 13 January 2014 in Geneva that will aim to deliver greater patient benefits and support high quality patient care. Derived from codes of ethical practice and health policy positions of the five supporting organizations, this framework is based on four overarching principles: 1) putting patients first, 2) supporting ethical research and innovation, 3) ensuring independence and ethical conduct, 4) and promoting transparency and accountability.

    The five organizations are the International Alliance of Patients’ Organizations (IAPO), the International Council of Nurses (ICN), the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA), the International Pharmaceutical Federation (FIP), and the World Medical Association (WMA).

    Ensuring ethical conduct, transparency and accountability are key in the development and testing of medicines and other health technologies.

    On 11 December 2013, the European Commission published the EU-funded report "Health Inequalities in the EU", produced by a consortium led by Sir Michael Marmot of University College, London. It summarises new evidence on health inequalities in the EU and assesses the effectiveness of policy responses.

    Reducing inequalities in health between different socio-economic groups and between different parts of the EU is one of the burning issues facing the European Union today. For the last 4 years, the public health directorate in SANCO has been coordinating the implementation of the EU strategy to address health inequalities. You can find the report by clicking the following link

    On the occasion of Rare Disease Day 2014, EURORDIS is organising a Networking Lunch & Policy Round Table Interactive Discussion between rare disease patients and other stakeholders on 25 February 2014, in Brussels. Among the topics discussed will be improving access to quality care & innovative treatments, addressing unmet medical needs, and empowering people living with rare diseases & their families. A detailed agenda and information to register will soon be available on the EURORDIS website.

    8th of May 2014 - International Thalassaemia Day! Join Us! Tell us your plans!

    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 the health care.

    In this context, we would like to share with you TIF's plans for this year's International Thalassaemia Day! A few of these activities are the following:

    • Creation of a campaign Kit - message and poster
    • "Red Skies" Project: Collaboration with Airlines for the establishment of a Campaign to alleviate patients with Thalassaemia and SCD
    • Press Conference in Cyprus (TIF Headquarters)
    • Project 8: "Red Day" - School Activities and Educational Visit in Cyprus
    • Drawing contest in Schools in Cyprus
    • Furthermore, we are excited to announce the creation of our new blog, dedicated to the 8th of May Activities! We invite you to share your ideas and plans for the International Thalassaemia Day! Click here to visit our new weebly blog.

    Winner of 2013 Red Day – Jackson Sparks!

    We are thrilled to publish the 2013 winning entry of the writing contest conducted by TIF at the Grammar Junior School in Nicosia, in the context of the 2013 Red Day, of the International Thalassaemia Day, held each year on the 8th of May. The first Prize was granted to Jackson Sparks, from grade 4A. Below, you can read his essay:

    All About Thalassaemia
    By Jackson Sparks

    Thalassaemia is a disease found all over the world, but it is mostly found in countries around the Mediterranean Sea. You can only get thalassaemia when you are born. There are cells in your body called red cells. The red cells carry oxygen to our heart, brain and lungs. To help the red cells getting air to our brain, heart and lungs, there are little things called haemoglobin. The red cells contain haemoglobin blocks in them that can carry oxygen.

    There are different cells in your body such as the white cells plasma and Platelets. The white cells fight off germ is to keep us healthy. The Platelets are like little tiny marbles that stick together when you are hurt, to help stopping you from bleeding. Plasma is kind of like yellow watery things that is in us, it also carries lots of nutrients that our bodies use to keep us healthy and strong.

    Have you ever wondered where the white and red cells come from? They come from your bones and Platelet also come from your bones. Sometimes red cells don't develop right and don't deliver enough oxygen, so you turn pale. This nutrient staff needs to be in the red cells. Anaemia and Thalassaemia are the same disease but just a different word.

    If you have Thalassaemia the best thing for you to do is to go to the doctor and have a blood transfusion. The blood is full of tiny new red cells. You will have lots of energy after the transfusion. After a while these red blood cells will not last long. After you have a transfusion and the new blood cells break up your iron breaks up also. This happens every time you have a transfusion. When the iron breaks up it finds somewhere in your body and sits there. Please be kind and nice to these people with thalassaemia.

    In the scope of TIF's strengthened collaboration with the WHO Regional Office for the Eastern Mediterranean Region (EMRO) , the new director of the Non-communicable Diseases & Mental Health (NMH) Department, Dr Samer Jabbour, will visit the TIF headquarters in Cyprus, on 13 February 2014. The purpose of this meeting is 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. Furthermore, in the context of this visit, Dr Jabbour accompanied by TIF, will meet with the honourable Minister of Health of Cyprus, Dr Petros Petrides. He will also visit the Cyprus Thalassemia Centre, and its Laboratory of Population Screening, as well as the Cyprus Institute of Neurology and Genetics where he will be toured and informed about their activities.

    Prof. Mehran Karimi, TIF medical collaborator in Iran and Professor of the Paediatric Haematology-Oncology Department at the Haematology Research Centre of Namazi Hospital at the Shiraz University of Medical Sciences, supported by Mrs Fatemeh Hashemi, Chairperson of the Charity Foundation for Special Diseases (CFFSD), and distinguished Board Member of TIF, will organise an Educational Thalassaemia Symposium for the training of Afghani medical specialists in Shiraz, Iran, on 5-6 February 2014. TIF has been invited to attend and contribute to this Symposium. Iran is a neighbouring country to Afghanistan with much expertise and a highly successful prevention and management program. The exchange of knowledge and best practice as well as networking is imperative for the successful outcome of this symposium.


    Research & Therapeutic News
    Studies are being conducted for a feasibility trial to show the possibility of the structured intervention of community health workers addressing existing barriers to improve Hydroxyurea use, and efficiently reinforce family partnerships for the self-management of Sickle Cell patients (ITHANET, 5-10/01/2014).
    Propanolol and Red Cell Adhesion of Non-asthmatic Children with Sickle Cell Disease: Researchers are investigating the possibility that a single dose of propanolol can decrease red cell adhesion to laminin and endothelial cells as compared to baseline (ITHANET, 5-10/01/2014).
    Studies are being conducted to investigate FibroScan readings in patients with sickle cell disease and iron overload secondary to blood transfusions, and to correlate the FibroScan results with MRI R2* (ITHANET, 5-10/01/2014).
    Genotype/phenotype correlation studies for β-thalassaemia patients are coordinated through the ITHANET portal, with the aim to develop a universal set of markers and techniques for the stratification of β-thalassaemia and SCD patients into treatment subgroups (ITHANET, 5-10/01/2014).

    Delegation Visits
    Iran - February 2014
    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