European Patient Advocacy Group
Adequate patient representation and coverage of all Main Thematic Groups, and preferably also of the Work-Packages across all member states is top-priority for Endo-ERN.
Application via EURORDIS only will result in official installation of an ePAG. 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 organizations who will ensure that the patient voice is heard throughout the ERN development process. Patient organizations can become ePAG member organizations and patients can become ePAG representatives.
Prerequisites for an Endo-ERN ePAG representative:
- Representation, with a clear mandate, of a national patient organization for a (cluster of) rare endocrine condition(s), as specified in one of the Main Thematic Groups.
- 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 Work-Packages themes.
- A clear awareness on time needed and available to spend on Endo-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 Endo-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.
EURORDIS has also implemented an ePAG leadership capacity-building programme, which empowers ePAG patient representatives with the knowledge and skills they need to be able to effectively participate in ERN activities.
Endo-ERN patient representatives
The ePAG representatives for Endo-ERN are:
- Johan G. Beun, patient representative for the Dutch Adrenal Society NVACP, representative of the Board, the Netherlands
- Petra Brügmann, patient representative for the German Network of Pituitary and Adrenal Diseases, Leader of the MEN group, Germany
- Johan de Graaf, patient representative for the Dutch Pituitary Foundation, chairman, the Netherlands
- Jette Kristensen, patient representative for the Addison Foreningen Danmark, chairman, Denmark
- Diana Vitali (parent), patient representative for the Associazione Italiana Displasia Setto Ottica eIpoplasia del Nervo Ottico, founder and president, Italy
Is your patient organisation interested in becoming an ePAG member organisation? Or are you interested in becoming an ePAG patient representative?
Please contact the Endo-ERN Coordinating Center