European Public Affairs Committee (EPAC)

The EURORDIS European Public Affairs Committee (EPAC) was created on 27 March 2004 to provide support to the advocacy activities of EURORDIS. It is a permanent internal Committee whose members have an official mandate to represent our organisation.

The EPAC has three main purposes:

  • To share information on latest European policies affecting rare diseases, from research to health care and services  
  • To discuss views and seek support from other EURORDIS colleagues
  • To determine the position of EURORDIS on specific issues


The EPAC is co-chaired by the President of EURORDIS and the Chief Executive Officer. The EPAC members communicate via emails on a regular basis in order to react promptly to advocacy issues affecting rare disease patients. They adopt positions by consensus. The positions of the EPAC are submitted to the Board who adopt all official positions and documents.

Composition of the EPAC:



Page created: 08/05/2014
Page last updated: 23/05/2017
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases