Patients

About the Episode 1 In the first episode of this 3-part podcast series, entitled ‘Dealing With Psychological Distress’, Hosts George Constantinou, TIF Board Member, and Expert Thalassaemia Patient, and Maria…

Every single one of us has the ability to make a difference, large or small, and together we can make real progress in raising valuable awareness about thalassaemia and its…

The objective of this meeting, which brings together eminent haemoglobinopathies specialists and expert patient advocates from Italy and other countries, is to highlight the pivotal value of advocacy in enabling…

Where was my wife? I found myself sitting alone in front of the obstetrician, who my wife, Helen, and I had met for the first time only minutes earlier. But…

Rare Disease Day is the movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease everywhere…

The US Food and Drug Administration (FDA) has announced the approval of Mitapivat (PYRUKYND®) tablets as treatment for haemolytic anemia in adults with pyruvate kinase (PK) deficiency. The oral PK…

The Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) adopted a positive opinion recommending marketing authorization for Oxbryta® (voxelotor) tablets for the treatment of hemolytic…

“Although thalassemia has always been endemic in Europe, especially in southern European countries such as Cyprus, Greece and Italy, the disease now knows no borders and constitutes an increasing health,…