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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 PUBLICATION | Nutrition in Thalassaemia: A Guide for Patients, Families, and Caregivers
The guide encompasses: An overview of the nutritional needs specific to people with thalassaemia Methods for nutritional assessment Detailed explanations of nutrients particularly important for thalassaemia patients Insights into how…
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TIF STUDY | Patient and Caregiver Perceptions of Thalassaemia Care in 2023
The study revealed that most patients with thalassaemia are receiving adequate treatment, including regular blood transfusions, chelation therapy, proper monitoring, and suitable imaging. Out of 2082 participants, 79.5% began transfusion…
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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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TIF News
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News
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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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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MYELODYSPLASTIC SYNDROMES | Advantages of Iron Chelation Revealed in Analysis of Low-Risk MDS
A recent groundbreaking study sheds new light on the effectiveness of iron chelation therapy (ICT) for patients suffering from low-risk myelodysplastic syndromes (LR-MDS). By delving into the impact of ICT…
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