Actualités

This year, World Blood Donor Day will once again be celebrated around the world on 14 June! The event serves to thank voluntary, unpaid blood donors for their life-saving gifts of blood and also to raise awareness of the need for regular blood donations to ensure that all individuals and ...

  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!!! Sponsorship opportunities are available to #patients with thalassaemia from countries ...

  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 ...

In its most severe form and without adequate care, thalassaemia can be lethal in early childhood, and although  International Thalassaemia Day has come and gone, awareness is paramount.   Andrew Obenshain, Head of Europe at gene therapy company bluebird bio, looks into what it means to live with thalassaemia, with ...

What did 1,500 patient groups from different countries and therapy areas think of pharmaceutical companies in 2018? To what extent did these companies meet patients’ expectations?   A recent survey conducted by Patient View unveils the patients‘ perspective on the reputation and performance of 46 companies in the healthcare industry, ...

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 ...

World Hemophilia Day is an international awareness day for hemophilia and other bleeding disorders. It is held annually on April 17, date of the birthday of Frank Schnabel, founder of the World Federation of Hemophilia. Since 1989, World Hemophilia Day is the day the whole bleeding disorders community comes together ...

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 challenges ...