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). …
The European Commission has released new versions of the official templates for the ERN Application: HCP and Network application & self assessment forms. These revised forms must replace the former ones for your application. All documents are available here and the European Commission FAQ is updated regularly
Each HealthCare Providers applying to be Member of European Reference Networks should be endorsed nationnally. The HCPs / Centers of Excellence must indeed provide a letter of national endorsement together with its application and self-assessment forms. Some information on Each national processes are provided in the European Commission page on the …
Our Members are regularly brainstorming and liaising to define our Network and conduct the self-assessment process. To stay updated on our ERN project development, visit our Network page !
In order to ensure patients participation and meaningful representation within our ERN, we have launched a call for participation to Patient Organisations. Patients representatives are invited to contact us to become Members of our transversal Patient Working Group.
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 …
The European Commission has organised the ERN Info Day in Brussels on April, 7th. This event gathered stakeholders interested in the ERN project and ERN Coordinators. Following the morning presentations on the ERN call for proposals, we have attended the ERN Board of Coordinators meeting with the European Commission, EURORDIS, as …
Welcome to this new website that supports the first European Reference Networks (ERNs) on Rare Diseases!
