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For 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

Drugs and drug safety

What are innovative drugs? Innovative drugs are also known as Originator, Reference or Brand. Innovative drugs: have gone through three or more phases of rigorous clinical trials over almost two decades are authorised by officially established regulatory agencies (EMA, FDA) to be marketed and used by healthcare professionals on humans Innovative or originator drugs are ...

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 Global Survey 2017-18 on the quality of healthcare services available for the treatment of thalassaemia and sickle cell anaemia: Patients’ questionnaire – We need your opinion

TIF is conducting a survey on the quality of treatment and care for patients with thalassaemia and sickle cell disease, inviting patients from all around the world to participate. Our aim is to document the patients’ voice about the quality of treatment available and lobby for a better quality of treatment for patients with thalassaemia ...

International Day of Persons with Disabilities

What is it? International Day of Persons with Disabilities (December 3) is an international observance promoted by the United Nations since 1992. The observance of the Day aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities.

Patient Solidarity Day 2017 #PSD2017

Theme: Globally Empowered Patients: Power through Knowledge Patients have the right to be engaged as key partners, empowered to play a genuine and meaningful role in shaping decisions about their own health. This Patient Solidarity Day, advocates from across the world will be standing united in recognition of the significant need for, and benefit of, empowered and informed patients. Patient empowerment will ...

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 ...

Sickle Cell Anaemia special – TIF Global Survey 2017 on the quality of services available for treatment

TIF is conducting a survey on the quality of treatment and care for patients with thalassaemia and sickle cell disease, inviting patients from all around the world to participate. Our aim is to document the patients’ voice about the quality of treatment available and lobby for a better quality of treatment for patients with thalassaemia ...

Patients and Healthcare Professionals, do you report side effects?

EMA Survey on the safety of medicines and on the reporting of adverse drug reactions. Survey available at: https://ec.europa.eu/…/EMA-survey-on-reporting-adverse-drug… Tags: #patientsafety #SideEffects #pharmacovigilance.   TIF’s position: The Thalassaemia International Federation (TIF) has focused attention for some time now and continues to do so, on the need for more strengthened and coordinated actions towards ensuring patients’ safety by protecting …

Approval of HSCT project for the cure of Thalassaemia patients by the Govt. of India

Coal India Ltd. under their CSR activity in coordination with the Ministry of Health and Family Welfare, Govt. of India has approved an HSCT project for the cure of thalassemia patients. They would like to help 200 patients in a year. Thalassemics India has been given an opportunity to coordinate this project as per their role …

Patients for Patient Safety – Spring 2017

Patients’ stories of health care harm touch people’s hearts. The stories of the experiences of how patients and families can and do turn tragedy into compassion and motivation for change inspire people and help to raise awareness of the need to improve patient safety and health care quality.

1st Cardiology Symposium on Thalassaemia

The 1st Cardiology Symposium on Thalassaemia that took place on 17-18 June 2017 in Thessaloniki Greece concluded in great success. The programme was divided into a doctors’ scientific group of sessions to which patients were able το participate and a Capacity-Building group of sessions offered exclusively to patients. Mr Panos Englezos, President of TIF Board …

2nd Pan-Asian Conference on Haemoglobinopathies 26 & 27 September 2015

The 2nd Pan-Asian Conference on Haemoglobinopathies was organised by the Thalassaemia International Federation (TIF), in collaboration with the National Institute of Hematology & Blood Transfusion (NIHBT) and the Vietnam Thalassaemia Association (ViTA), under the auspices of the Ministry Health of Vietnam, and took place on 26 & 27 September 2015. This exciting event aimed towards fostering ...