ECHDO works for CHD patients of all ages, gaining knowledge from parents of children with CHD and from adult patients to achieve common goals. As increasing numbers of heart children survive into adulthood, ECHDO members include both parent support groups and support organisations with a focus on GUCHs.
ECHDO members have a wealth of experience in overcoming the challenges facing new, growing and long-established support organisations, including raising funds, registering as a legal body, organising volunteers and staff, setting up events, lobbying and running campaigns.
Within the network, members exchange resources to raise awareness and understanding of CHD and they collaborate on events including summer camps for young people.
ECHDO works to:
- Increase understanding of CHD and support for patients of all ages: babies, children and GUCHs (grown-ups with congenital heart disease) in Europe;
- Provide up-to-date information about CHD to patients and their families;
- Lobby for European standards on medical and psychosocial care of CHD patients, including access to safe medicines;
- Share information about research studies and patients’ experiences within Europe;
- Stimulate the development of national CHD support networks;
- Increase its impact by liaising with other European networks.