Memorie Ufficiali
La TIF è attivamente impegnata nel processo di sviluppo di memorie ufficiali (position paper) su questioni chiave che riguardano i pazienti talassemici, cercando di migliorare la loro qualità di vita e l’accesso ai trattamenti.
Ogni memoria ufficiale viene formulata a seguito di un periodo di intensa ricerca e consultazione con i nostri membri in tutto il mondo. Al termine, questi documenti vengono divulgati ai principali stakeholder e alle autorità sanitarie a livello nazionale, regionale e internazionale affinché vengano implementate le azioni necessarie per affrontare il problema in questione.
Inoltre, detti documenti sono diffusi tra la rete globale di professionisti sanitari della TIF e, cosa più importante, sono distribuiti alle associazioni per la talassemia in tutto il mondo, incoraggiando i sostenitori dei pazienti a sviluppare un dialogo produttivo con le loro autorità sanitarie nazionali, la comunità medica, gli istituti di ricerca e l’industria, sostenendo l’attuazione della memoria ufficiale pertinente.
Vedi anche:
Definizioni importanti in aree di interesse della TIF Report: L’uso di farmaci generici nella talassemia Le posizioni della TIF in breve
Ti invitiamo a leggere le nostre Memorie Ufficiali (Position Papers) che trovi qui di seguito:
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.
Oltre all'enfasi posta sul tema del sangue nel suo programma formativo, la TIF ha preparato, pubblicato e distribuito un documento di posizione dal titolo "Salvaguardare la sicurezza del sangue". Questo documento fa parte di una raccolta di testi simili, che la TIF pubblica regolarmente al fine di evidenziare e chiarire la sua posizione su questioni essenziali per la gestione efficace della talassemia, e quindi per la salute e la qualità della vita dei pazienti a livello mondiale.
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