How to Become an Endo-ERN patient representative

How to become an Endo-ERN patient representative

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.

Prerequisites for an Endo-ERN patient representative:

  • Representation, with a clear mandate, of a national patient organisation 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 organisation 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 patient 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.