23 May 2023
Recap of the Heritable Thoracic Aortic Diseases Spring Meeting
In the framework of ERNs, EURORDIS, the association which represent the Voice of Rare Diseases Patients in the European Union, will set-up “EURORDIS Patient Advisory Groups – EPAGs” linked to the 21 thematic ERN grouping. EURORDIS Call to Patient Representatives is open until April, 18th and elections will take place between April 19th and May, 3rd. Patient Representatives who will be members of EPAGs will have a major role in the ERN Boards. This will ensure a meaningful participation and representation in the ERN decision-making process. To register the interest of your Patient Organisation, email email@example.com indicated your thematic ERN.
More information here