Patient involvement

The involvement of patients is paramount for the European Reference Networks. A collaboration exists with EURORDIS, the European Organization for Rare Diseases, which is specifically represented through ePAG members in each network.

ePAG Role & Responsibilities

Network Board Level:

  • Representing the voice of the patient community within ERN ensuring (and being assured) the needs of people living with a rare disease are included in the strategic and operational delivery of the network, and to;
  • Create a bridge between the ERN and the patient community, ultimately to improve access to high quality diagnosis, care and treatment.

Disease Specific Level:

  • Advise on disease specific activities and projects and engage with the appropriate patient communities
  • Contribute to the development of patient information, treatment policies, good practice guidelines and care pathways
  • Support the network to dissemination of information and communication to the wider patient community
  • Contribute to the development of research and research priorities
  • Provide advice on ethical issues and data protection on the application of personal data rules, compliance of information consent and management of complaints