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:
EPAG | Country | Disease area | EPAG or supporting partner |
---|---|---|---|
ARVC-selbsthilfe | Germany | 2 | EPAG |
Síndromes Arrítmicos relacionados con la Muerte Súbita (SAMS) | Spain | 1, 2, 3 | EPAG |
Hart4Onderzoek | The Netherlands | 4 | EPAG |
AMRYC | France | 1 | EPAG |
Danish Heart Foundation (Hjerteforeningen) | Denmark | 1, 2, 3, 4, 5 | EPAG |
Finnish Association for Heart Children and Adults | Finland | 1, 2, 3, 4, 5 | EPAG |
Cardiogen patient organisation Romania (Asociației CardioGen) | Romania | 1, 2, 5 | EPAG |
LMNA Cardiac | The Netherlands | 2 | EPAG |
Petit Coeur de Beurre | France | 4 | EPAG |
Timothy Syndrome Alliance | UK | 1, 3, 5 | EPAG |
AICARM | Italy | 2 | EPAG |
AICCA | Italy | 4 | EPAG |
Irish Heart Foundation | Ireland | 1, 2, 3, 4, 5 | EPAG |
ACMRC ONLUS | Italy | 2 | Supporting partner |
Hjärtebarnsfonden (Swedish Heart Foundation) | Sweden | 1, 2, 3 | Supporting partner |
Riksförbundet HjärtLung | Sweden | 1, 2, 3 | Supporting partner |
Associação Coragem | Portugal | 4 | Supporting partner |
Cardiac Risk in the Young | UK | 1, 2, 3 | Supporting partner |
Herzkinder Fulda | Germany | 4 | EPAG |