News
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EXCLUSIVE WEBINAR | Guidelines for the Management of a-Thalassaemia |14 March 2024
📌 Webinar Title: Guidelines for the Management of α-Thalassaemia 📌 Date & Time: Thursday, March 14, 2024, 13:00 Bangkok / 07:00 Paris / 22:00 PST This session aims to…
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SPOTLIGHT | RAIN Endorses the First International Guidelines for Pyruvate Kinase Deficiency
Pyruvate kinase deficiency (PKD) is the most common cause of chronic congenital non-spherocytic haemolytic anaemia, impacting between one in 100,000 to one in 300,000 individuals globally. Those with PKD suffer…
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EVENT | 1st RAIN Summit for Patients with Rare Anaemias | 18-19 May 2024
The workshop will present an excellent opportunity for patients to exchange knowledge on the latest scientific advances for Rare Anaemias, and share concerns and challenges. A unique occasion for a…
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REGULATORY NEWS | AstraZeneca’s Voydeya Recommended for PNH Treatment in EU
Voydeya is a first-in-class, oral, Factor D inhibitor developed as an add-on to standard-of care Ultomiris (ravulizumab) or Soliris (eculizumab) to address the needs of the approximately 10-20% of patients with PNH who…
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Pain Impact and Management in Individuals With Transfusion-Dependent Thalassaemia
Over the last several decades, there has been significant progress in addressing the main symptoms and related health issues of people with transfusion-dependent thalassemia (TDT). Yet, the problem of pain…
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TIF PATIENTS & HEALTHCARE PROFESSIONALS CAPACITY BUILDING WORKSHOP | 16-19 May 2024
Organized within the framework of TIF’s internationally acclaimed educational programme, the workshop offers a prime opportunity for both physicians and patients to engage in meaningful knowledge exchange concerning the newest…
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ELEVATING AWARENESS | 29 February Is Rare Disease Day
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.…
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PAROXYSMAL NOCTURNAL HEMOGLOBINURIA | Ruxoprubart Scores FDA Orphan Drug Designation for PNH Treatment
FDA’s recognition of Ruxoprubart as an orphan drug for PNH underscores its potential to fulfill a crucial need for individuals grappling with this disease condition. Ruxoprubart is currently undergoing a…
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BREAKING NEWS | TIF’s Collaboration with WHO Extended to 2027
Our enduring collaboration was newly endorsed by WHO’s Executive Board at its 154th session in January 2024, demonstrating our significant and ongoing contribution to WHO’s strategic health objectives. This extension…
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