Who we are

The German umbrella organisation for children with congenital heart disease (BVHK e. V.) represents the interests of children and adolescents with heart disease and their families. The BVHK supports various regional self-help groups to exchange information and experience, and is the contact point for patients and their families. The organisation provides families with companionship, help, consultation and contact. The voluntary managing committee of the organisation was formed by the parents of children with heart diseases, and our local parent groups provide support to families all over Germany. The BVHK receives encouragement from its scientific advisory board consisting of well-known cardiologists and paediatric heart surgeons.

www.bvhk.de/

The Children's Heart Federation (CHF) is the UK's leading children's heart charity and the umbrella body for voluntary organisations working to meet the needs of children and young people with heart conditions and their families. CHF provides information through a telephone helpline and a wide range of publications and it campaigns to improve clinical, educational and social care. CHF supports families by giving heart children medical equipment, making grants and organising short breaks. CHF works to enable its member groups to develop and builds partnership with other organisations to improve the life chances and opportunities for heart-children.

www.childrens-heart-fed.org.uk

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 (grown-ups with congenital heart disease). 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.

www.echdo.org

The Norwegian association for children with congenital heart disease (FFHB) is a national organisation with approximately 4000 members. FFHB has a broad scope of activities intended to serve our purpose – that is, to look after the interests of children and adolescents with heart disorders, including their families, and to help families who have lost a child with a heart disorder. FFHB has seven employees whose tasks include political lobbying, organising social gatherings for children, adolescents and their parents, holding conferences for health personnel, publishing information material, and cooperating with our healthcare system.

www.ffhb.no

Menudos Corazones is a non-profit organization whose primary purpose is to help children born with congenital heart disease and their families. The organisation offers free lodging programmes as well as psychological and emotional help programmes for affected families, information material about congenital heart disease, and hospital entertainment programmes.

www.menudoscorazones.org

The Swedish Heart Children’s Association is a national organisation working voluntarily to improve the conditions for children and young people with heart defects and their parents, and to spread knowledge and information about children with heart defects. Another aim is to support and help children and young people with heart defects and their families to get in touch with one other.

www.hjartebarn.org

The National Registry for Congenital Heart Defects is the national repository for medical data on patients with congenital heart defects in Germany. To date, no less than 26,000 children, adolescents and adults have been registered.

The Registry is the central project activity of the Competence Network for Congenital Heart Defects and receives funding from the German Federal Ministry of Education and Research. The Competence Network is a research association that has successfully cross-linked medical centres, scientists, physicians and patient/parent organisations in Germany. Its aim is to foster multidisciplinary cooperation in order to achieve a swift mutual transfer of knowledge between research and health care.

www.kompetenznetz-ahf.de
www.herzregister.de

Lesch Communication Consultancy is an agency specialized in health communications. The company advises healthcare organizations in their marketing and innovation efforts. As a Corience partner, Lesch Communication Consultancy is responsible for designing and marketing the web portal and for its editorial content.

www.lesch-kommunikation.de