EURORDIS has played a crucial role in the development of ERNs through the EU directive on cross-border health care, and has established a European Patient Advocacy Group (ePAG) for each ERN disease grouping.
ePAGs will bring together elected patient representatives and affiliated organisations who will ensure that the patient voice is heard throughout the ERN development process. Patient organisations can become ePAG member organisations and patients can become ePAG representatives. Application via EURORDIS only will result in official installation of an ePAG.
Prerequisites for an RITA-ERN ePAG representative:
- Representation, with a clear mandate, of a national patient organisation for a (cluster of) rare RITA-ERN condition(s).
- Good understanding of the English language, sufficient for adequate discussions and communication.
- Experience/specific expertise from the patient’s perspective in rare endocrine conditions and/or one of the WG themes.
- A clear awareness on time needed and available to spend on RITA-ERN specific activities with periodical feedback to the patient organization represented.
- A few years of experience in running of, supporting of, and participating in a patient support group.
- The patient group should explicitly guarantee the continuum of the representation, the follow up, and dissemination.
Recommended for an RITA-ERN ePAG representative:
- The patient group should be registered in the normal legers, tax (exemption) registered, and have a public accessible website.
- The patient group should publish an annual report of its activities and its finances.
Bottom-up the RIPAG organization is structured as follows:
Patient Advocacy Groups dealing with primary immunodeficiency´s, auto inflammatory or autoimmune diseases.
RIPAG Patient Representatives:
Individuals within a RIPAG member, having an official permanent mandate to represent their Patient Advocacy Group
A group of RIPAG Patient Representatives actively participating in RITA and/or RIPAG Working Parties.
A group of ROPAG Patient Representatives elected by the RIPAG council and representing RIPAG in RITA Council and from there in the RITA executive Board