Outcomes of the ERN-EuroBloodNet participation at the ECRD Conference 2024, in Brussels.
The successful 12th ECRD conference was attended by more than 700 people from 49 countries around the world.
The 12th edition of the European Conference on Rare Diseases & Orphan Products (ECRD), was held in Brussels and online from 15th to 16th May 2024, and was attended by over 700 participants from 49 different countries. The event was coordinated by EURORDIS and co-organized by Orphanet.
Participants included 370 patients, advocates and patient organisations; 160 ERN/Academics/Healthcare Professionals; 120 industry representatives and 25 Payer body/HTA agency/Regulator/Policy makers.
About 137 posters were displayed online (available via the ECRD website) and the ERN-EuroBloodNet team was present with two posters:
- “The role of ENROL Registry on Advancing Translational and Clinical Research in Hematology” presented by Victoria Gutiérrez Valle (Scientific Manager).
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- ERN-EuroBloodNet facilitating access to cross-border healthcare for patients with rare hematological diseases in the European Union” presented by Mariangela Pellegrini (Educational & Patients Program Manager).
Mariangela Pellegrini was also part of the panel on "Innovative Therapies, Unequal Access: Bridging the gap for rare disease treatments" which was a succesful opportunity to understand and address the challenges that contribute to the widening gap between market access and actual patient access; to analyze and advocate for improved policies that better supports access to orphan medicines for rare disease patients; to propose and discuss shared policy measures, especially for ultra-rare diseases, and to explore solutions for the financial and logistical complexities across various Member States.
Take a look at the photos of the event and the open letter!