News
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TIF European Health Policy Webinar Series | 21 September 2023
Designed for patients and their families, these webinars aim to foster national advocacy for the improvement of service delivery. The series will encompass all EU legislative files directly or indirectly…
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PUBLICATIONS | Nutrition Guidelines in Thalassemia & PKD
Nutrition holds a significant position in the lives of individuals afflicted with thalassaemia and other hereditary anaemias. As part of its enduring commitment to generating guidelines and educational materials for…
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IN THE SPOTLIGHT | Explore Our Latest Work in the TIF Newsletter, August Edition
The remarkable collaborations and activities carried out in the past two months have been truly invigorating, and we eagerly anticipate the initiation of upcoming noteworthy endeavours. In this issue, read…
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DRUGS | EU Pulls Authorization of Adakveo for Sickle Cell Disease
The decision comes after the Committee on Medicinal Products for Human Use (CHMP) recommended in May 2023 to pull the approval following a review of additional Phase III data. The EC’s decision…
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COLD AGGLUTININ DISEASE | Enjaymo Improved Life Quality in Patients for 2.5 Years
“Enjaymo provides sustained and durable treatment benefits in chronic CAD, including a continued meaningful impact on patient quality of life in the long term,” the researchers wrote. However, these benefits…
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NEW SURVEY | Thalassaemia Care Delivery From A Patient Perspective
The survey focuses on capturing the patient perspective on thalassaemia care delivery in various countries. This initiative by TIF aims to gather valuable insights into the experiences and challenges faced…
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NEWS | WHO Updates Essential Medicines List, Adds New Medicines for Thalassaemia
Until recently, the WHO EML recommended only deferoxamine for iron chelation, limiting patients’ access to other crucial pharmacological alternatives for the effective management of their condition. Since 2019, the Thalassaemia…
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CLINICAL TRIALS | Positive Results Found with Transplant for Patients with Aplastic Anemia
The findings were reported in the journal Blood. The trial’s cohort included 35% of patients from underrepresented racial and/or ethnic groups, suggesting that this BMT method for patients without a…
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PUBLICATION | Travel Guidance for Patients and Families
Welcome to ‘Travel Guidance for Patients & Families’, on the newest TIF’s publications! This practical handbook is intended specifically for travelers with thalassaemia, sickle cell disease, and rare anaemias. Our…
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