The Planet of Rare Diseases - European Pacient Advocate Group -

Planeta bolilor rare
Dan Alexandru


The ePAG Community is known as a group of Patient Organisations members and non-members of EURORDIs that have registered with EURORDIS to be engaged with the ERN ITHACA, to collaborate on specific tasks (e.g. respond to surveys), to disseminate information about the ERN across their wider patient community, be consulted occasionally for feedback, and be kept informed on the development of the ERN. These Patient Organisations won't be involved actively in any of the working groups as an advocate.