Patients can access the resources and shared knowledge of ERN-ITHACA by being referred to one of the member Health care providers through standard local pathways.

The patient Council

ITHACA aims to maintain a high degree of cooperation with European Patient Advocacy Groups (ePAGs) and other National or European lay public or patients’ organizations at all levels of decision making: Board, Executive Committee, and WG. To facilitate this cooperation, the patient organizations associated with ITHACA forms a Patient Council, which will be made up of representatives of all lay public or patients’ organizations expressing their interest to join ITHACA Council.

The members of the Patient Council elect a chair and a co-chair for one-year terms to represent them in the Executive Committee, as well as three other representatives (a total of 5) to represent them in the Board. The Patient Council will also hold one annual face-to-face meeting and WebEx meetings at a frequency fixed by the Council itself. Representatives of national or European PAGs contact the ERN coordinator and chair of the Patient Council to be enrolled in the Council. The list of affiliated groups and their representatives is made available on the public Website. They may be linked to their own websites.

To get more details on the Patients’ Council meetings agenda, please contact Anne Hugon :

From 11 to 12 CEST  : ITHACA Patient Council on ” ePAG Impact Assessment Framework ” Pilot : https://us02web.zoom.us/j/81425540081

5-6 PM