EURORDIS Patient Advocacy Groups representatives have been elected. For the ERN Rare Multisystemic Vascular Diseases, several representatives are elected: Luisa Maria Botella (HTT Spain), Paolo Federici (Associazione Fondazione Italiana HHT ‘Onilde Carini’), Rafaella Restaino (Fondazione Alessandra Bisceglia W ALE Onlus), Patrice Touboulie, MARFANS (France), and Christina Grabowski, Morbus Osler Selbsthilfe e.V. (Germany). These representatives will be part of the ERN Board and cooperate closely with our Members, as well as with our ERN Patients-WG.
More information on EPAGs can be found here with the list of elected patient representatives