ERN Affiliated Partners: rules

The ERN Board of Member States has published an official statement on “Affiliated Partners”. ERNs should plan how they will integrate and cooperate with such Affiliated Partners. These Partners will be HCPs designated by Member States, following application process and the relevant criteria. They will be from Member States with no HCPs already…

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EURORDIS EPAGs representatives elected

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).…

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ERN Application

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

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ERN National Endorsement

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…

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Call to Patient Representatives

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.

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EURORDIS Call to Patient Organisations

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…

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