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Useful links and support

People living with a congenital heart condition may need to take special care of their physical health, and may encounter some particular emotional and practical issues.

This section provides some useful links to sources of information and support about living with congenital heart defects.

Pulmonary Hypertension Association UK

A national charity offering advice and support on living with pulmonary hypertension. Visit the Pulmonary Hypertension Association UK website.

Rotary Heartbeat House

A local charity helping babies, children and adults diagnosed with congenital and cardiovascular diseases primarily by supporting the work of the cardiac unit based at Southampton General Hospital. This is achieved by providing specialised equipment, services and facilities to help patients and their relatives through their cardiac journey. Visit the Heartbeat House website.

Somerville Heart Foundation

Somerville Heart Foundation is the only UK wide charity dedicated to supporting adults born with all types of congenital heart disease conditions. Visit the Somerville Heart Foundation website.

British Heart Foundation

The BHF website provides useful information about heart conditions, diagnosis and treatment. It also has useful general information on healthy living, exercise and congenital heart disease. Visit the British Heart Foundation website.

Arrhythmia Alliance

The Arrhythmia Alliance has useful information on abnormal heart rhythms and treatments. Visit the Arrhythmia Alliance website.

Down's Heart Group

Providing information, advice and guidance support for those with Down’s syndrome and an associated cardiac condition, their families and carers at every stage of life from pre-natal diagnosis, through to adulthood. Visit the Down's Heart Group website.


Supporting people with disabilities to achieve greater independence, through access to affordable, worry-free mobility. Leasing cars, wheelchair accessible vehicles, scooters and powered wheelchairs. Visit the Motability website.

MedicAlert (UK)

MedicAlert (UK) provides an identification system for individuals with hidden medical conditions such as a congenital heart condition. Visit the MedicAlert (UK) website.

British Red Cross

Helping anyone, anywhere in the UK or around the world, to get the help that they need. Visit the British Red Cross website.