Charities and support groups for families of children with heart problems
We have collated a list of charities and support groups for families of children with heart problems (all active as of 2016). Some of them specialise in certain heart conditions while others are only active in certain places.
Charities
- Amelia Matters: supporting children born with congenital heart disease.
- Antenatal Results and Choices (ARC): helping parents and healthcare professionals through antenatal screening and its consequences
- Arrhythmia Alliance: improving the diagnosis, treatment and quality of life for all those affected by arrhythmias.
- Ben Williams Trust: supports children with abnormal heart rhythms (arrhythmias) and their families
- British Heart Foundation: working to fight against cardiovascular disease.
- Cardiac Risk in the Young (CRY): preventing young sudden cardiac deaths through awareness, screening and research, and supporting affected families.
- Cardiomyopathy UK: providing support to patients and families and promoting research for the disease cardiomyopathy
- Children’s Heart Association: supporting families of children with a heart condition.
- Children’s Heart Federation: the main umbrella body for British congenital heart disease charities and voluntary organisations.
- Congenital Heart Defects UK: educating and raising awareness of congenital heart defects and supporting patients and families.
- Contact a family: a national charity for families with disabled children, providing information, advice and support.
- Down’s Heart Group: a charity offering support and information relating to heart conditions associated with Down's Syndrome.
- Heartline: supports children with heart disorders and their families, whatever the condition wherever it is treated
- Lagan’s Foundation: offers home respite and support services for young children with heart defects or feeding issues.
- Little Hearts Matter: offers support and information, and raises awareness of those affected when a child has only half a heart.
- Max Appeal: Supports families affected by DiGeorge syndrome, VCFS and 22q11.2 deletion.
- Oxford Young Hearts: support children with heart conditions and their families in the counties served by the Oxford University Hospitals NHS Trust.
- Patches Heart Group: a support group for children with congenital heart defects / acquired heart conditions and their families in the community.
- The Scottish Association for Children with Heart Disorders (SACHD): supports children and young adults with congenital heart disorders, and the families in Scotland.
- Somerville Foundation: supports young people and adults born with a heart condition.
- The 22 Crew: A charity providing resources for patients with 22q deletion and their families.
- Tiny tickers: improving the detection, care and treatment of babies with serious heart conditions
Hospitals and hospital-associated charities
- Birmingham Children’s Hospital
- Bristol Royal Hospital for Children
- Dublin, Our Lady's Children's Hospital
- Leeds General Infirmary
- Leicester, Glenfield Hospital
- Liverpool, Alder Hey Hospital
- London, Evelina London Children's Hospital
- London, Great Ormond Street Hospital for Children
- Newcastle, Freeman Hospital
- Southampton, Wessex Cardiothoracic Centre (Southampton Children’s Hospital)
NOTE: As of 2016, Royal Victoria Hospital in Belfast no longer operates on children with congenital heart disease.
