Patients

Oxbryta Gets Marketing Authorisation In The UK For Patients With Sickle Cell Disease
Actualités

Oxbryta Gets Marketing Authorisation In The UK For Patients With Sickle Cell Disease

Voxelotor, an oral treatment taken once daily, is the first medicine authorized in Great Britain that directly inhibits sickle haemoglobin (HbS) polymerization, the molecular basis of sickling and destruction of…
THALASSAEMIA CHAMPIONS PODCAST | The 2nd Episode Has Been Released!
Actualités

THALASSAEMIA CHAMPIONS PODCAST | The 2nd Episode Has Been Released!

With open dialogue-formatted episodes, featuring thalassaemia patient advocates, mental health professionals, and other special guests, this show explores everything from psychosocial anxiety and relationship issues to treatment-related fears, while striving…
POLICY NEWS | TIF Issues Statement On The New EU Regulation For Blood, Tissues And Cells
Actualités

POLICY NEWS | TIF Issues Statement On The New EU Regulation For Blood, Tissues And Cells

This single Regulation, once approved by Member States, will replace all existing EU Directives on Blood, Tissues and Cells and will be equally applicable in the EU territory. The proposal…
BLOOD TRANSFUSION | Hemanext Begins Rollout of Hemanext ONE® RBC Processing And Storage System In Europe
Actualités

BLOOD TRANSFUSION | Hemanext Begins Rollout of Hemanext ONE® RBC Processing And Storage System In Europe

Physicians in Norway have initiated recruitment of chronically transfused patients with haematological malignancies, including myelodysplastic syndrome (MDS), to receive transfusions using RBCs processed and stored with the Hemanext ONE® system.…
INTERNATIONAL THALASSAEMIA DAY | 8 May 2022
Actualités

INTERNATIONAL THALASSAEMIA DAY | 8 May 2022

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…
NEW WEBINAR | Exploring The Value Of Patient Advocacy For Better Thalassaemia Care
Actualités

NEW WEBINAR | Exploring The Value Of Patient Advocacy For Better Thalassaemia Care

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…
IRON BOY: SURVIVING β-THALASSAEMIA MAJOR by Arthur Bozikas
Patients’ stories

IRON BOY: SURVIVING β-THALASSAEMIA MAJOR by Arthur Bozikas

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 2022 | Raising Awareness For People With Rare Diseases
Actualités

RARE DISEASE DAY 2022 | Raising Awareness For People With Rare Diseases

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…
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