ERN-EuroBloodNet voices on Rare Hematological Diseases at EHA Unplugged podcast!
María del Mar Mañú and Béatrice Gulbis joined the European Hematology Association’s podcast series to share expert insights on rare hematological diseases.
EHA Unplugged is a podcast series by the European Hematology Association (EHA) where leading experts share their knowledge, insights, and experiences in the field of hematology. The series features distinguished voices from across the hematology community and is available on platforms such as Spotify and YouTube. In recent months, ERN-EuroBloodNet has been represented in the series by its Scientific Coordinator, María del Mar Mañú Pereira, and its Co-Coordinator, Béatrice Gulbis, who shared expert perspectives on rare hematological diseases.
In the session "Revolutionizing Patient Registries to Promote Research and Improve Health Outcomes", María del Mar Mañú Pereira explains how the lack of structured data has long been one of the biggest obstacles to advancing care and research in SCD. RADeep is helping to change that by making clinical, laboratory, and epidemiological data interoperable, reusable, and research-ready.
"For many years, we said that personalized medicine in Sickle Cell Disease was almost impossible... But now we know that one of the biggest barriers has been the lack of standardized clinical data. That's what we're working to change."
Highlighting innovations in sickle cell disease care (SCD), Béatrice Gulbis presented "Point-of-Care Tests for Neonatal Screening of Sickle Cell Disease", emphasizing the role of early and accessible screening in improving outcomes for newborns:
"Newborn screening for sickle cell disease is the first crucial step to get a diagnosis of the disease. The method used for screening should be the most adapted to the local context. It can be a simple, user-friendly point-of-care testing method dedicated to the disease or a more "complex" method dedicated to many rare conditions included into a newborn screening programme".
Find all the episodes HERE!