Support groups and charities

Find out more about support groups and charities you can get involved in and support. 

Support groups and charities

A national charity offering advice and support on living with pulmonary hypertension.

Visit to find out more.

Pulmonary arterial hypertension can be associated with another medical condition, and some of our patients with congenital heart disease have a syndrome called Eisenmenger syndrome.

It is a form of congenital heart disease in which the pressure in the pulmonary (lung) arteries is high, causing an increased resistance to blood flow in the lungs.

View our patient information leaflet – please discuss with your doctor or specialist nurse if you would like additional information.


The Somerville Foundation is the only UK wide charity dedicated to supporting adults born with all types of congenital heart disease conditions. They also support young people transferring into adult heart services. Registration is free to access their support and advice pages.

Visit the The Somerville Foundation website.

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 (BHF) website.

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

Visit the Arrhythmia Alliance website.

Visit the Down’s Heart Group website. 

Motability is a National UK Charity which helps disabled people and their families to powered wheelchairs to disabled people.

The site also provides information on hire purchases and contract hire of cards, scooters and wheelchairs under the Motability scheme.

For more information visit

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

Consisting of bracelets or neck chains/pendants, backed up by a 24 hour hep line that hospital staff can call for additional medical information. 

For more information visit

British Red Cross help support anyone in the UK and around the world, get the support they need.

Visit for more information. 

Scar Information Service Sponsored by Smith & Nephew, manufacturers of cica-care scar treatment.

The scar information service provides information on the various types of scars and therapies available to help camouflage or reduce the appearance of a scar. 

Visit for more information.