Three new ERN-EuroBloodNet Dissemination Pills already available!
The new webinar program has been created to increase awareness of concrete ERN actions and results in short 10-20 min format, check them!
The ERN-EuroBloodNet Dissemination webinar program has been created to increase awareness of concrete ERN actions and results.
The design of each webinar will be performed according to the trending topics and actions developed within the ERN-EuroBloodNet or in collaboration with the stakeholders. The program aims to highlight the key crucial concepts, encouraging a dialogue between the speakers and the audience and seeking clarification of the actions for the webinar audience.
Check the recent releases!
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ERN-EuroBloodNet European mapping on Arterial Thrombosis and Venous Thrombosis in Pediatric patients – Provided by Rubén Berrueco
The mapping reflects the state of the art of pediatric thrombosis management throughout Europe, highlighting the participation from 12 countries. Also, as a result, the ERN-EuroBloodNet Pediatric Thrombosis Working Group has been created to develop the "European Principles of Care for Pediatric Thrombosis" and to arrange regular meetings for discussing of complex cases.
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Satisfy Trial (ERN-EuroBloodNet): PROMs Selection Process. Associating PROMs in PKD in Clinical Trials – Provided by Eduard van Beers
SATISFY study (Mitapivat in red blood cell membranopathies) is the first ERN-EuroBloodNet sponsored clinical trial. The trial is now open in Denmark and the Netherlands, providing targeted treatments to patients with hereditary spherocytosis, hereditary stomatocytosis, and congenital dyserythropoietic anemia II.
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Innovative Therapies, Unequal Access: Bridging the gap for rare disease treatments. The added value of the ERN-EuroBloodNet – Provided by Mariangela Pellegrini
At the 12th edition of the European Conference on Rare Diseases & Orphan Products (ECRD) coordinated by EURORDIS and co-organized by Orphanet (15 & 16 May 2024 in Brussels) Mariangela Pellegrini, representing ERN-EuroBloodNet, shed light on the growing disparities in access to innovative therapies for rare disease patients across Europe, underlining the need of bridging the gap between market access and effective patient access to treatments.
Stay tuned for next ones!!
