Patient Council : 35 Patient Organisations

Dorica Dan (Romania)

Ammi Sundqvist (Sweden)

Workpackage leads

Chair: Dorica Dan – Patient Représentative, e-Pag from RONARD – (Romanian National Alliance for rare diseases network, Zalau, Romania ) and RPWA (Romanian Prader Willi Association).

Co-chair: Ammi Sundqvist – Patient Representative, e-Pag from RBU Sweden (Swedish federation for children and youth with physical impairments, Stockholm, Sweden) and  IF Global (International federation for Spina Bifida and Hydrocefalus).

Key objectives

  • Keep strong connection between professionals, patients, families through deep interaction with Patient Representatives, both at the EU level (ePAGs, EURORDIS) and at national level (national patient support groups)
  • Involve Patient Council in the governance of all Workgroups
  • Support PC representation at the Board (5 members)