Thalassaemia is a hereditary blood disease that CAN be prevented! But in what ways? ΤΙF’s latest educational video shines a spotlight on the essential aspect of the disease’s prevention, still challenging in numerous countries across the world. Our goal? To further improve understanding and knowledge of the prevention’s vital ...Leggi Articolo »
TIF with support from Celgene Corporation, has developed a disease specific e-registry with health record for patients with thalassaemia. This e-registry is now completed, as a first version, and is ready to be piloted in selected centres in Cyprus, Greece and Bulgaria. After piloting and user comments, the e-registry ...Leggi Articolo »
A significant number of gene therapy approaches are currently undergoing clinical trials, some of which are already producing encouraging results. The Bluebird Bio’s gene therapy product, under the name ZYNTEGLO™, has received positive comments from the scientific committees of the European drug regulatory authority (EMA). This means that the practical ...Leggi Articolo »
Gene therapy continues to evolve with new emerging treatments finally reaching its promised potential: providing a one-time lifelong cure for even the rarest and most severe of genetic disorders. TIF’s Expert Advisor, Dr. Carsten Werner Lederer, explores this critical issue in his article, by highlighting the recent conditional approval for ...Leggi Articolo »
At TIF we believe that well-informed patients are able to gain in-depth understanding of their condition and make purposeful decisions about their health! That being so, we are pleased to announce that registrations for the upcoming 6th class of its Thal e-Course for patients are now open! You can access the registration form here 👉 http://bit.ly/2BVkX9cLeggi Articolo »
TIF to organize a Capacity Building Workshop for Patients’ Organizations and individuals with thalassaemia in October 2019!
This fall TIF is coming to Germany✈️✈️ and is more than excited to announce its forthcoming Capacity Building Workshop for Patients’ Associations and people with thalassaemia and other haemoglobinopathies, which will take place on 11-13 October, 2019 in Hamburg, Germany!!! For more details, please click hereLeggi Articolo »
This is how this year’s voting results were shaped: Universal access to quality thalassaemia healthcare services: Building bridges with and for patients (Winning theme, 196 votes) Patients’ voice at the frontline: Advocating for a better future in thalassaemia care and management (112 votes) The globalization of thalassaemia – Common ...Leggi Articolo »