Patients and Patient Organisations in ERN GUARD-Heart
To put the patient and their family in the centre of healthcare services, ERN GUARD-Heart has established a European Patient Advocacy Group (ePAG). The ePAGs are 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.
Patient representatives can provide the patients´ perspective and thus contribute a lot to the aims and activities of ERN GUARD-Heart. Their view is added value and can show clinicians the unmet needs of their community.
There are two different levels of cooperation – either as associate or supporting partner:
- Associate partners – The European Patient Advocacy Group (ePAG)
Patient Organisations registered in Europe that have designated an ePAG advocate who is patient or family member living with a rare heart disease and able to participate in regular bimonthly online meetings and is contributing regularly to epag agendas and topics. They have a direct voice within ERN GUARD-Heart to provide the patient perspective.
- Supporting partners
Patient Organisations or patient representatives that do not have a representative in the ePAG group (e.g., because they don´t have the time for meetings during daytime), but who are willing to collaborate on specific tasks (e.g., respond to surveys), help to disseminate information about the ERN and be kept informed on the development of the ERN activities.
The national organisations in the European Patient Advocacy Group and the supporting partners that are currently participating are:
| EPAG | Country | Disease area | EPAG or supporting partner |
|---|---|---|---|
| AICARM (IT) | Italy | 2 | EPAG |
| AICCA (IT) | Italy | 4 | EPAG |
| AMRYC (FR) | France | 1 | EPAG |
| ARVC-Selbsthilfe (DE) | Germany | 2 | EPAG |
| CardioGen (RO) | Romania | 1, 2, 5 | EPAG |
| Coragem (PT) | Portugal | 4 | EPAG |
| Hart4Onderzoek (NL) | The Netherlands | 4 | EPAG |
| Herzkinder Fulda / BVHK (DE) | Germany | 4 | EPAG |
| Hjerteforeningen (DK) | Denmark | 1, 2, 3, 4, 5 | EPAG |
| Irish Heart Foundation (IE) | Ireland | 1, 2, 3, 4, 5 | EPAG |
| LMNA Cardiac (NL) | The Netherlands | 2 | EPAG |
| Petit Coeur de Beurre (FR) | France | 4 | EPAG |
| SAMS (ES) | Spain | 1, 2, 3 | EPAG |
| Sydänlapset ja-aikuiset (FI) | Finland | 1, 2, 3, 4, 5 | EPAG |
| TSA (UK) | UK | 1, 3, 5 | EPAG |
| ACMRC (IT) | Italy | 2 | Supporting partner |
| CRY (UK) | UK | 1, 2, 3 | Supporting partner |
| Hjärtebarnsfonden (SE) | Sweden | 1, 2, 3 | Supporting partner |
| Patientenvereniging Aangeboren Hartafwijkingen (NL) | The Netherlands | 4 | Supporting partner |
| Riksförbundet HjärtLung (SE) | Sweden | 1, 2, 3 | Supporting partner |
| Srdíčkáři (CZ) | Czech Republic | 1, 2, 4, 5 | Supporting partner |
| Union of Heart Patients of Navy Officers, Coast Guard and Friends, Hellenic Navy (GR) | Greece | 1, 2, 4, 5 | Supporting partner |