Thalassaemia International Federation (TIF)

#MedicalEducation - The deadline to apply for the prestigious TIF Renzo Galanello Fellowship 2024 is fast approaching! Will you be among the select #physicians who will seize this unparalleled opportunity for specialized training in #Thalassaemia and #Haemoglobinopathies at the esteemed Joint Red Cell Unit of UCLH - University College London Hospitals NHS Foundation Trust, in the UK? Time is running out...⏱️ Submit your application by August 30 at: https://lnkd.in/d3S-utby #FellowshipProgramme #RenzoGalanelloFellowshipProgramme #MedicalSpecialists #Education #EducationMatters #Thalassemia #SCD #HaemoglobinDisorders #NHS #THALIA2024

#Events - Mark your calendars for an essential upcoming webinar on #ThalassaemiaManagement, presented by TIF's American Network for Haemoglobin Disorders. 🗓️ Date: 16 September 2024  🕐 Time: 13:00 New York / 14:00 Rio de Janeiro This session will explore Blood Transfusion Safety and Management as key components of the thalassaemia therapy regimen with presentations from esteemed experts Dr. Kevin H.M. Kuo, MD, MSc, FRCPC, Associate Professor Division of Hematology, Department of Medicine, University of Toronto, #Canada, and Dr. Sandra Loggetto, Pediatric Hematologist, Medical Manager, Transfusion Outpatient Center for Hemoglobinopathies, Sao Paulo Blood Bank, #Brazil. TIF Board Members and Patient Advocates, Maria Hadjidemetriou, US, and Bessie Calabria, Canada, will coordinate the discussion. Register now to secure your place: 👇 https://shorturl.at/yGQLB #TIF #ANHD #Webinar #HaemoglobinDisorders #Thalassaemia #Management

🌍📈 #HealthAlert - A few days ago, the World Health Organization (WHO) has declared mpox (monkeypox) a public #healthemergency of international concern, based on the ongoing outbreak in the Democratic Republic of Congo (DRC) that has spread to at least 13 other African countries, with possible cases in #Europe and #Asia. This zoonotic #viraldisease, primarily found in Central and West #Africa, can spread through close contact with an infected person or animal, and appears with symptoms such as fever, rash, and swollen lymph nodes. On behalf of #TIF, we urge you to stay informed and vigilant. Ensure you seek accurate and up-to-date information from reliable sources such as the WHO, the US Centers for Disease Control and Prevention (CDC), and your local health authorities. Additionally, please take extra precautions while travelling to prevent exposure. Let's stay safe and protect our community! For more related info, please visit: 👇 https://lnkd.in/g-SfF4e2 https://lnkd.in/dFS6YD4n #Mpox #Monkeypox #StayInformed #StayHealthy [Image credit: PanAmerican Health Organization (PAHO)]

America, here we come! 🇺🇸 We are thrilled to announce that the 1st PanAmerican Conference on Thalassaemia and other Rare Blood Diseases will be held in April 2025, in Orlando, #USA! Join us for a seamless and memorable event as we advance discussions and knowledge-sharing on the latest #research and #treatments for thalassaemia and blood disorders. We are currently working on finalizing a date that would facilitate the participation of as many stakeholders as possible. This event is organized by the Thalassaemia International Federation (TIF) and its American Network for Haemoglobin Disorders, established to create a robust and cohesive platform that connects patient associations, healthcare professionals, and other stakeholders across the Americas. Stay tuned for more! #Orlando2025 #PanAmericanConference #HealthcareInnovation #Thalassaemia #RareBloodDisorders Cooley's Anemia Foundation Abrasta - Associação Brasileira de Talassemia Thalassemia Foundation of Canada

We would like to inform you that the Thalassaemia International Federation (TIF) offices will be closed from August 12 to 16 for the summer break. We wish everyone a restful and joyful holiday. See you soon! #TIFUpdates #HolidayAnnouncement #SummerBreak

Exciting news for the β-#Thalassaemia community! As of today, 8 August, the ground-breaking gene-editing therapy #Casgevy has been officially approved for use in NHS England by NICE - National Institute for Health and Care Excellence . The #UK joins the countries that have already authorised this therapy, opening up new treatment options for around 460 #patients, aged 12 and over, who currently rely on regular #bloodtransfusions to manage their condition. Read more: https://lnkd.in/dNh8-W7q

☀️ As many head off for well-deserved vacations this #August, the need for #blooddonations becomes even more critical. Blood supplies sharply decline during this time, yet people with conditions like #thalassaemia continue to require regular #transfusions. As Thalassaemia International Federation (TIF), we urge each one of you to dedicate just a little bit of your time to donate precious #blood. Join us in ensuring that no life is put at risk due to blood shortage! Find your nearest blood donation center, donate today and be a hero for someone tomorrow. #ThalassaemiaInternationalFederation #BloodShortages #DonateBlood #SaveLives

A recent systematic review published in the American Journal of Hematology emphasizes the urgent need for more research on screening sickle cell #retinopathy (SCR) in #patients with #sicklecell disease (SCD). 👁️ SCR affects #vision by altering the vascular components of optic discs and can lead to #symptoms such as darkened shadows, flashes, vitreous hemorrhage, or even retinal detachment in severe cases. The study highlights the incredible benefits of advanced image-based #screening methods, such as ultra-wide-field fundus imaging. These techniques can significantly reduce end-organ damage (severe impairment of major body organs due to systemic disease) and improve global screening measures for #SCD patients. 🔬 Shockingly, SCR is equally common in #children and #adults with SCD (around 33%) but increases in severity with age. It is also more common in male patients and those with #HaemoglobinSC and #HaemoglobinSS genotypes. 🔗 https://lnkd.in/dvJfhKrS     #SickleCellDisease #SCR #HealthResearch #EyeHealth #VisionCare #PublicHealth #MedicalAdvancements #Haemoglobinopathies **Photo credit: Getty Images

Agios Pharmaceuticals announced topline results from their first pediatric study, ACTIVATE-KidsT, a #clinicaltrial in #children with #PKdeficiency who are regularly transfused. The findings are promising, with 28.1% of #patients treated with #mitapivat, a pyruvate kinase activator, achieving a transfusion reduction response compared to 11.8% of patients on placebo. In addition, Agios plans to file supplemental new drug application (sNDA) for mitapivat (#PYRUKYND®) in #thalassaemia, following positive results from the Phase 3 ENERGIZE and ENERGIZE-T trials for both non-transfusion-dependent and transfusion-dependent α- or β-thalassaemia. The sNDA will be filed for #FDA review by the end of the year. Read more about these exciting developments: 🔗 https://lnkd.in/dG9HRkFs... 🔗 https://lnkd.in/d2-PMaCH...

The 19th Annual Scientific Conference of the Academy for Sickle Cell and Thalassaemia (ASCAT), in collaboration with the British Society for Haematology and the European Hematology Association (EHA), will be held from October 2-4, 2024, in London, UK. This important yearly event brings together leading #experts, #researchers, #healthcareprofessionals, #policymakers, and #patientadvocates from around the globe to discuss advances and share knowledge on the treatment and management of #Thalassaemia and #SickleCell Disease. Echoing the Conference’s theme, ‘Achieving Equitable Progress: A Call for Collaborative Action in a World of Growing Disparities’, discussions will spotlight the remarkable advances in #treatment options, while confronting the reality that these breakthroughs have not benefited everyone equally. Thalassaemia International Federation (TIF) will be represented by its Executive Director, Dr. Dr. Androulla Eleftheriou, and Medical Advisor, Dr. Michael Angastiniotis, who will be sharing invaluable insights and contributing to key panel discussions. To learn more about the scientific programme and to register, please visit: https://lnkd.in/eYWTn-pY #ASCAT2024 #Conferences #Haematology