https://www.gosh.nhs.uk/wards-and-departments/departments/clinical-specialties/inherited-cardiovascular-diseases-information-parents-and-visitors/charities-and-support/
Charities and support
There are a number of specialist charities which are available to provide support and information to patients and families affected by inherited cardiovascular diseases. Many of these charities focus on a specific inherited heart condition or group of heart conditions.
They are often able to provide written information and educational resources. Some charities provide dedicated services for children and young people. Many provide the opportunity for patients or parents to contact other families or young people affected by the same condition. Follow the links below to find out more:
Cardiomyopathy Charities
Cardiomyopathy UK is the national charity for people affected by heart muscle disease.
Cardiomyopathy UK provide special services and support for young people diagnosed with cardiomyopathy. You can find more information about their services for young people here.
Arrhythmia Charities
There are several charities providing support for patients and families affected by heart rhythm problems or by sudden cardiac death:
Aortopathy Charities
Marfan Trust is a charity providing support and resources for patients diagnosed with Marfan syndrome and Loeys-Dietz syndrome.
The Aortic Dissection Charitable Trust provides support and resources for patients and families affected by aortic dissection.
Cardiac Charities (covering multiple conditions)
British Heart Foundation provide a range of resources specifically aimed at children and young people with heart conditions. You can find more information about their support services for children and young people here.
Charities associated with the Inherited Cardiovascular Disease Team
Max's Foundation is a charity which funds research into Inherited Cardiovascular Diseases in childhood through the Centre for Inherited Cardiovascular Disease at GOSH.