News
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UNITING EXPERTS | Highlights from the 1st Nordic Red Blood Cell Meeting
The meeting, organised by the Danish Red Blood Cell Centre of the Copenhagen University Hospital – Rigshospitalet, and led by the Centre’s Research Director, Dr. Andreas Glenthøj, brought together experts…
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ANNUAL REPORT 2023 | Unveiling TIF’s Impactful Achievements
In 2023, TIF enhanced its advocacy efforts with the WHO to advance the UN Sustainable Development Goals 2030 and universal health coverage, ensuring haemoglobinopathies remained a health agenda priority. Regional…
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WORLD PATIENT SAFETY DAY 2024 | Get It Right, Make It Safe!
This year the theme is “Improving diagnosis for patient safety” with the slogan “Get it right, make it safe!”, highlighting the critical value of correct and timely diagnosis in ensuring…
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REGULATORY APPROVAL | PiaSky Becomes the First Monthly Treatment for PNH in the EU
Paroxysmal Nocturnal Haemoglobinuria (PNH) is a rare and life-threatening blood condition where red blood cells are destroyed by the complement system – part of the innate immune system – causing…
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ACCESS TO INNOVATION | UK Greenlights Gene-Editing Therapy Casgevy for β-Thalassaemia Treatment
This development opens new treatment avenues for an estimated 460 patients aged 12 and above in England who rely on regular transfusions due to β-thalassaemia, leveraging innovative CRISPR gene-editing technology.…
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GLOBAL SURVEY | Understanding the Thalassaemia Community Health Literacy & Its Impact on Care
To improve the understanding of health literacy within the thalassemia community and how this may impact disease management and care, a global survey is being conducted by the Thalassemia Advocacy…
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JUST LISTEN | Voices of PK Deficiency Episode on the Impact of New International Standards
Host Dr. Rachael Grace is joined by Tamara Schryver of Thrive with Pyruvate Kinase Deficiency and Alejandra Watson from the PKD Foundation to shed light on these ground-breaking guidelines. Listeners…
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NEW APPROVAL | FDA Endorses Piasky for Paroxysmal Nocturnal Hemoglobinuria
Piasky, developed by Roche, is a monoclonal antibody that targets complement protein C5. Crovalimab binds to C5 to prevent its cleavage, thus preventing the formation of the membrane attack complex…
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CAD | Enjaymo Not Cost-Effective at Current Price, According to US Study
This conclusion was drawn from a cost-effectiveness study utilizing data from the Phase 3 CARDINAL clinical trial, which backed the treatment’s approval for CAD patients with a recent history of…
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