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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.

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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

Rare Disease Day 2020: Abundance of events & vast participation are expected in this year’s RDD

  Observed every year on the last day of February and in the 29th of February in 2020, Rare Disease Day seeks to raise awareness among the general public, as well as policymakers, public authorities, industry representatives, scientists, and health professionals about the more than 7,000 rare disorders that affect as many as 400 million people worldwide …

FAiTh Society Pakistan organised a series of special events for patients with thalassaemia

FAiTh - Fight Against Thalassemia Patients & Parents Society and its President, Ms Ayesha Mehmood, prepared several special surprises for 17 of their members, patients suffering from thalassaemia, in January and February 2020, at the FAiTh offices in Karachi, Pakistan, where their birthday celebrations were held. Ms Mehmood stated that FAitH, not only seeks to ...

FT-4202, FORMA’s Experimental SCD Therapy, Fares Well in Phase 1 Trial of Healthy Volunteers

  FT-4202, FORMA Therapeutics’ experimental disease-modifying therapy for sickle cell disease (SCD), shows a favorable safety and pharmacokinetic profile in healthy volunteers, according to data from a Phase 1 clinical trial. Patient recruitment is open for the second part of the trial (NCT03815695). Information about trial locations, all in the U.S., is available here. Trial findings were presented in …

‚FAiTh – Fight Against Thalassemia Association‘ presents its activities for January 2020

  The ‚FAiTh – Fight Against Thalassemia‘ group,  a longtime member of TIF operating in Pakistan, is dedicated to support, serve and love people with thalassaemia and their families, intending to create a general, massive awareness about the illness and motivate the public to further support thalassaemia patients. These are the group’s major activities for …

Panos Englezos Prize 2020

The application period for the ‚Panos Englezos Prize 2020‚ is now open

FDA grants Orphan Drug Designation for ARU-1801 for the Treatment of Sickle Cell Disease & β-thalassaemia

  An investigational gene therapy for Sickle Cell Disease (SCD) and β-thalassaemia, known as ARU-1801, has been given Orphan Drug Designation an orphan drug by the U.S. Food and Drug Administration (FDA), a status that helps to advance and support its development. The therapy is expected to increase functioning red blood cells through proprietary technology that inserts a …

Deferasirox Accord: A new generic of Exjade recommended for approval by the EMA

The Committee for Medicinal Products for Human Use (CHMP), the European Medicines Agency‚ (EMA) committee responsible for human medicines, has recently adopted a positive opinion recommending the granting of a marketing authorisation for the medicinal product Deferasirox Accord, by Accord Healthcare S.L.U.   Deferasirox Accord is a generic of Exjade, which has been authorised in …

Thalassaemia Month of Banyumas 2019 -„Banyumas Goes to Zero Growth of Thalassaemia 2023“

Written by Dinar Faiza (edited)   The Indonesian Thalassemia Foundation of Banyumas and the Banyumas District Government organised and launched, from November 1 to November 30, 2019, a massive pilot project of Thalassaemia Prevention Movement 2019, called “Thalassaemia Month of Banyumas“. Its theme was entitled „Banyumas Goes To Zero Growth of Thalassemia in 2023“. The …

Deferasirox Mylan: A new generic drug for the treatment of iron overload in β-thalassaemia major obtained approval by the EMA

  The European Medicines Agency’s (EMA) has recently granted marketing authorisation for the medicinal product “Deferasirox Mylan“, intended for the treatment of chronic iron overload due to blood transfusions in patients with β-thalassaemia major, non-transfusion-dependent thalassaemia syndromes and other anaemias. The manufacturer of this medicinal product is Mylan S.A.S. “Deferasirox Mylan“ will be available as 90 mg, 180 …

34 year old Victoria Gray will be the first American to get controversial gene-editing treatment for sickle cell disease

  Victoria Gray, 34-year-old mother-of-four, has volunteered to be the first American to have their genes edited with the controversial CRISPR technology to treat her SickleCell disease (SCD). For the first time, doctors in the U.S. have used the powerful gene-editing technique CRISPR to try to treat a patient with a genetic disorder. Gray volunteered for …

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 …

Arzneimittel und Arzneimittelsicherheit

Was sind innovative Medikamente? Innovative Medikamente sind auch unter dem Namen Originator (Originalarzneimittel), Reference (Referenzarzneimittel) oder Brand (Markenarzneimittel) bekannt. Innovative Medikamente: Medikamente, die über einen Zeitraum von fast zwei Jahrzehnten drei oder mehr Phasen rigoroser klinischer Studien durchlaufen haben sind von offiziell etablierten Zulassungsbehörden (EMA, FDA) zugelassen, um in Verkehr gebracht und und von medizinischen ...

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 ...

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 ...

Delegation Visit to Egypt – 12-16 September 2017

A 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; Participate in the ...

HOPE: MY CURE IS IN OTHER PEOPLE by Rojin Demirkiran (9 years old, 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 ...