TIF News

  The World Health Organisation (WHO) has contacted the Thalassaemia International Federation (TIF) to request the provision of its expertise and technical support on the thalassaemia care and management of patients in the North West Syria region. Currently, this region includes four Thalassaemia Centres with approximately 500 patients. These patients ...

  The Food and Drug Administration (FDA) will review an approval application for a drug designed to target the root cause of damage from sickle cell disease (SCD). South San Francisco, California-based Global Blood Therapeutics announced Thursday that the FDA had accepted its application seeking accelerated approval for Voxelotor, an oral drug ...

  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 ...

  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 here     

  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 ...

  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 ...

  A comprehensive article by Carsten W. Lederer (PhD), Petros Patsali (PhD), Panayiota Papasavva (MD, MSc), Thessalia Papasavva (PhD) and Marina Kleanthous (PhD, Head of the MGTD), on the thalassaemia carrier status of Cypriots, and the therapy developments in the country.        

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 ...

  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 ...