Patients
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News
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…
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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…
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News
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News
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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News
PYRUVATE KINASE DEFICIENCY | FDA Approves First Drug For The Rare Inherited Anemia
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…
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Clinical News
SCD Drug Oxbryta Receives CHMP Positive Opinion For Approval In The EU
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…
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News
THALIA2018-2021 | Europe Is Seeing A Surge In Thalassaemia, Project Results Show
“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,…
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TIF News
TIF Article: COVID-19 Pandemic Exacerbated Existing Problems With Thalassaemia Care
The article discusses how the COVID-19 pandemic has magnified challenges in thalassaemia care worldwide and underscores TIF’s activities throughout the coronavirus outbreak in support of patients with haemoglobinopathies. Hematology Advisor…
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News
FDA Grants Priority Review to Luspatercept-aamt for Anemia in Adults With NTD β-Thalassaemia
The FDA has set a Prescription Drug User Fee Act (PDUFA) goal date of March 27, 2022. In addition, the European Medicines Agency (EMA) has validated the Type II variation…
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News
TIF Signs Agreement With Resonance Health To Deploy FerriSmart®
FerriSmart is an AI-driven system for automated real-time measurement of liver-iron concentrate (LIC) in patients, using non-invasive MRI-based technology. Under the Letter of Agreement, TIF will engage with National Thalassaemia…
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