Documents de synthèse
La FIT s’engage activement dans le processus d’élaboration de documents de prise de positions sur les questions clés concernant les patients atteints de thalassémie, cherchant à améliorer leur qualité de vie et leur accès au traitement.
Chaque prise de position est formulée après une période de recherche intense et de consultation avec nos membres du monde entier. Une fois élaborés, les documents de position sont diffusés auprès des principales parties prenantes et des autorités sanitaires aux niveaux national, régional et international en vue de mettre en œuvre les actions nécessaires pour s’attaquer au problème soulevé.
Ces documents sont également diffusés parmi le réseau mondial de professionnels de la santé de la FIT et, surtout, sont distribués aux associations de thalassémie à travers le monde, encourageant les défenseurs des patients à établir un dialogue productif avec leurs autorités sanitaires nationales, la communauté médicale, les instituts de recherche et l’industrie, aux fins de la mise en œuvre de la prise de position donnée.
Voir aussi:
Définitions importantes dans les domaines préoccupants pour la FIT Rapport : L’utilisation de médicaments génériques dans la thalassémie Les positions de la FIT en quelques mots
Nous vous invitons à lire nos documents de prises de position ci-dessous :
The Thalassaemia International Federation (TIF) welcomes the European Commission's proposal on the new EU Regulation for Blood, Tissues and Cells as a highly significant policy step towards improving the protection and safety of blood donors and recipients within and across the EU territory and increasing patient access to innovative transfusion and transplant therapies.
The Thalassaemia International Federation (TIF) is expressing its grave disappointment over the recent announcement of Bluebird Bio, concerning the “wind-down” of its operations in Europe and the exclusive disposal of its gene therapy for beta thalassaemia (Zynteglo™) in the United States.
In this Position Statement, TIF wishes to address and clarify to the extent possible basic questions that oftentimes concern blood donors with regard to Covid-19 vaccination and blood donation.
Gene therapy has been a long-awaited scientific development for thalassaemia patients and has given
hope, optimism, and opened new horizons. It is imperative for ground-breaking scientific advances and innovative therapies to be sufficiently recognized by national health authorities in conjunction with not only an understanding of the impact of the disease on the daily lives of patients and their families but also in regards to the actual cost-of-illness for healthcare providers.
This document has been drafted in the context of the activities of the TIF multiannual programme (2018-2021), “Thalassaemia In Action” (THALIA). Its aim is to provide an overview of the multiple factors that impact the lives of people with Thalassemia and Sickle Cell Disease living in the European Union, and highlight specific recommendations addressed to policymakers in order to address key challenges, unmet needs and policy gaps and ultimately improve the patients’ health and lives.
In view of the plans made by national health authorities in every country across the world for the widespread vaccination of individuals against the SARS-CoV-2 virus, TIF herein presents the Federation’s position about the vaccination of patients with haemoglobin disorders against SARS-CoV-2.
Many patients with haemoglobinopathies, including thalassaemia and sickle cell disease, are at increased risk of developing severe complications from the coronavirus disease 2019 (COVID‐19). In this Position Statement, TIF reflects on general considerations and levels of risk for patients, the adaptation of haemoglobinopathy care, the blood transfusions safety and the blood supply challenges.
The safety concerns linked to the use of DEHP plasticizers, a manufactured chemical common in blood bags and PVC intravenous fluid sets, has been explored, and even questioned, by many in recent years. TIF's Statement follows the publication of the guidelines prepared by the European Commission’s Scientific Committee on Health, Environment and Emerging Risks (SCHEER) in June 2019 and the consequent decision to gradually withdraw products made with this plasticizer from 2023, and replace it with alternative plasticizers.
Through this Position Statement, TIF encourages National Health Authorities of every country across every region of the world, in the context of their national fight against the COVID-19 pandemic, to promote and adopt a series of policies in relation to the protection of the health and lives of individuals with haemoglobin disorders.
Outre l'accent mis par la FIT sur le thème du sang dans son programme éducatif, la Fédération a préparé, publié et distribué un document de synthèse intitulé « Protéger la sécurité du sang ». Ce document de synthèse fait partie d'un ensemble de documents similaires, que la FIT publie régulièrement afin de mettre en évidence et clarifier sa position sur des questions essentielles à la prise en charge efficace de la thalassémie, et donc à la santé et à la qualité de vie des patients dans le monde entier.
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