European Patient Advocacy Groups (EPAGs)

To put the patient and their family in the centre of healthcare services, ERN GUARD-HEART has established a Patient Advocacy Board. The Patient Advocacy Board is responsible for bringing the voice of patients and their families with rare heart diseases to the Network Board and support the Network with its activities on patient engagement and external communication. European Patient Advocacy Groups that are currently participating in the Patient Advocacy Board of the Network are:

EPAGCountryDisease areaEPAG or supporting partner
Síndromes Arrítmicos relacionados con la Muerte Súbita (SAMS)Spain1, 2, 3EPAG
Hart4OnderzoekThe Netherlands4EPAG
Danish Heart Foundation (Hjerteforeningen)Denmark1, 2, 3, 4, 5EPAG
Finnish Association for Heart Children and AdultsFinland1, 2, 3, 4, 5EPAG
Cardiogen patient organisation Romania (Asociației CardioGen)Romania1, 2, 5EPAG
LMNA CardiacThe Netherlands2EPAG
Petit Coeur de BeurreFrance4EPAG
Timothy Syndrome AllianceUK1, 3, 5EPAG
Irish Heart FoundationIreland1, 2, 3, 4, 5EPAG
ACMRC ONLUSItaly2Supporting partner
Hjärtebarnsfonden (Swedish Heart Foundation)Sweden1, 2, 3Supporting partner
Riksförbundet HjärtLungSweden1, 2, 3Supporting partner
Associação CoragemPortugal4Supporting partner
Cardiac Risk in the YoungUK1, 2, 3Supporting partner
Herzkinder FuldaGermany4EPAG