How to become an Endo-ERN patient representative

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:

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. 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. Therefore, EURORDIS membership is strongly advised for Endo-ERN ePAG representatives.

Application procedure:

• • Expression of interest – including motivational letter, CV and endorsement letter of your national patient organisation and completion of the application form
  • Discussion of the candidate by the Chairs of Endo-ERN and the presently available Endo-ERN ePAG representatives (at periodical meetings)
  • Acceptance by a majority of relevant stakeholders

This short guide can help you to decide whether to apply