The Eurordis European Public Affairs Committee (EPAC)

The Eurordis European Public Affairs Committee (EPAC) was created in September 2004 to provide support to the advocacy activities of Eurordis. It is a permanent committee of Eurordis, whose members have an official mandate to represent the organisation.

AgendaThe EPAC has three main purposes:

  • To share information among Eurordis representatives to ensure they all have the same up-to-date level of information;
  • To discuss views and seek support from other Eurordis colleagues;
  • To determine the position of Eurordis on specific issues.

Composition of the EPAC:

  • All Eurordis Board Members;
  • Eurordis staff and volunteers who have been given a mandate to represent Eurordis in other institutions;
  • Former Board members who still have a mandate to represent Eurordis.

InformationAll Eurordis representatives are appointed by the Eurordis Board of Directors or Board of Officers. The legitimacy of the EPAC therefore stems directly from the Board of Directors of Eurordis, which is elected by all Eurordis members. Appointments to the EPAC are for a defined period and the composition of the EPAC is reviewed on a regular basis.
The work of the Committee is animated by the President and the CEO and articulated with the core Advocacy Group, including CEO, General Secretary, European Public Affairs Officer, and Health Policy Officer. The Committee is supported by the Eurordis European Public Affairs Officer, based in Brussels and assisted by the CEO’s personal assistant.
 

List of members of the EPAC :

  • Terkel Andersen, President of Eurordis, Danmarks Bløderforening - Denmark
  • Yann Le Cam, CEO of Eurordis
  • Christel Nourissier, General Secretary of Eurordis, Alliance Maladies Rares - France
  • Karen Aiach, ALLIANCE SANFILIPPO - France
  • Flaminia Macchia Bangsgaard, European Public Affairs Officer - Eurordis
  • Fabrizia Bignami, Therapeutic Development Officer - Eurordis
  • Valentina Bottarelli, European Public Affairs Adviser - Eurordis
  • Birthe Byskov Holm, Rare Disorders Denmark - Denmark
  • Denis Costello, Manager of Web Communications - Eurordis
  • Avril Daly, Genetic & Rare Disorders Organisation (GRDO), Ireland
  • Dorica Dan, Romanian Prader Willi Association(RPWA/APWR) - BoardroomRomania
  • Jean Elie, Vaincre la Mucoviscidose - France
  • François Faurisson, Clinical Research Advisor - Eurordis
  • Lesley Greene, CLIMB - United Kingdom
  • Torben Grønnebaek, Rare Disorders Denmark - Denmark
  • Anja Helm, Manager of Relations with Patient Organisations - Eurordis
  • François Houÿez, Public Health Officer - Eurordis
  • Anna Kole, Public Health Project Coordinator - Eurordis
  • Michele Lipucci di Paola, Associazione Veneta per la Lotta alla Talassemia - Italy
  • Flavio Minelli, Unione Italiana Ittiosi - Italy
  • Béatrice de Montleau, AFM - Association Française contre les Myopathies -France
  • Mirando Mrsić, The Croatian Society of Patients with Rare Diseases - Croatia
  • Anders Olauson, Agrenska - Sweden
  • Françoise Salama, Association Française contre les Myopathies - France
  • Rosa Sánchez de Vega, Asociación Española de Aniridia - Spain
  • Tsveta Schyns, European Network for Research on Alternating Heiplegia (ENRAH) - Austria
  • Paloma Tejada, Communications Manager - Eurordis
  • Ariane Weinman, Personal Assistant - Eurordis
  • Mirando Mrsić, The Croatian Society of Patients with Rare Diseases - Croatia

(membership as of September 2009)

Author: Eurordis
Photo credits: agenda © Darren Hester; info © Roswitha Schacht; boardroom © Grace

Page created: 05/11/2009
Page last updated: 18/12/2009