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Pour les patients

The radical improvements in prevention and management of β-thalassaemia major that have been taking place in the last three decades, primarily in the West, have led to significant progress in thalassaemia prevention and treatment. Thanks to these improvements, patients with β-thalassaemia major can now have an increased survival rate and a better quality of life. TIF’s mission is to ensure this progress reaches and benefits all patients across the world.

The Thalassaemia International Federation (TIF) has developed a plethora of educational material and resources that provide concise, up to date information on all aspects of thalassaemia, from prevention to clinical management, and cover almost all age groups. Constantly monitoring international developments, TIF’s objective is to provide strong and solid knowledge about the latest advances in thalassaemia prevention and care to patients, their families, healthcare professionals and the community at large, and thus empower them to advocate for better quality of life for thalassaemia patients worldwide.

This section provides a variety of material and electronic resources of interest to patients, including articles, books, e-courses, clinical trial updates, mobile apps, and opportunities to participate in awareness-raising activities.

Read

Read about thalassaemia, clinical trial updates aiming to provide the final cure, patients’ stories and key publications.

Patients’ Stories Patients’ Rights About Thalassaemia All About Thalassaemia (kids’ edition) Clinical trial updatesSickle Cell Disease TRANSFUSION for thalassaemia: I can help Useful Links Learn through videos

Participate & Learn

Discover exciting opportunities to participate & learn through contests and complete our online courses to become an expert patient. Join the International Thalassaemia Community to share ideas and experiences with patients all over the world.

Thal e-Platform for Patients Thalassaemia Patients Connect International Thalassaemia Day Join the ThaliME community TIF Digital Library

Latest Posts for Patients

Médicaments et pharmacovigilance

En quoi consistent les médicaments innovants ? Les médicaments innovants sont également connus comme médicament princeps, de référence ou de marque. Les médicaments innovants : ont été soumis à trois phases, ou davantage, d'essais cliniques rigoureux pendant presque deux décennies, et sont autorisés par des agences réglementaires officielles (EMA, FDA) en vue de commercialisation et ...

Alpha thalassaemia

This section is dedicated to alpha (α-) thalassaemia. THE MAJOR ALPHA (α-) THALASSAEMIAS ARE: HbH disease α-thalassaemia Hydrops Foetalis (=Hb Bart’s Hydrops Foetalis) Many diseases in humans are caused by abnormalities in the blood and these are categorized according to the component of the blood which is affected: white cell diseases, platelet diseases and red …

BLOOD RED by Dr. Namitha A Kumar (PhD) – Thalassemia Intermedia (38 years)

Winner Story #3 - International Thalassaemia Day 2017 If someone were to ask me which color defines you best? I would instantly say “blood red!” One might think why this color? Isn’t it a violent color? Doesn’t it remind of you blood spilt? You would change your mind if you ask a child/adult with Thalassemia ...

A Story of a Beautiful Soul by Shaheen Rao

Winner Story #2  - International Thalassaemia Day 2018 It’s a universal truth all typical mothers, who lost their beloved ones, love to talk about or share memories or write something. I feel myself exclusively privileged that TIF has provided an opportunity to express my inner feeling for this forum. There are no proper words to ...

TIF Delegation Visit to Cairo, October 2017

A Thalassaemia International Federation (TIF) delegation visited Cairo, Egypt between September 12 and September 16, 2017. The delegation consisted of Dr Michael Angastiniotis, TIF Medical Advisor and Dr Dimitrios Farmakis, Cardiologist. The visit had two main objectives: Discuss with the stakeholders involved in thalassaemia patient care and prevention in Egypt and assess the current situation; ...

« HOPE: My cure is in other people »- A poem by a 9-year old thalassaemia patient from Turkey

About the author Her name is ROJİN DEMİRKIRAN and she is from Diyarbakır, Turkey. Rojin was born in 2008, she has 5 more siblings and she is a thalassaemia major patient. Rojin is currently in grade 5 and she has written a poem through which she wishes to spread awareness about life with thalassaemia and the hope for ...