Useful links

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.

Patient associations

National organisations

European organisations

International organisations

Congenital heart disease

Children's Heart Information Network (TCHIN) 
An international organisation that provides reliable information, support services and resources to families of children with congenital heart defects and acquired heart disease, adults with congenital heart defects, and the professionals who work with them.

General heart disease

British Heart Foundation
In addition to supporting GUCH, the BHF have a selection of leaflets for Congenital Heart Disease patients.

American Heart Association
This US site has a wide selection of information on the various forms of heart disease, medications and treatment.

This site is for patients who have undergone or about to undergo valve replacement surgery. The site has a personal stories section, and a discussion forum. Some of its members have CHD.

Transplant links


This US site contains a vast amount of information on organ transplantation including patients experiences, news and research, information on becoming a donor and The transplant journey, a multimedia tour of the transplantation process.

Organ Donation (UK Blood and Transplant)
UK Transplant supports organ transplantation, providing donor organ matching and allocation services. It also maintains the UK Organ Donor Register.


Information and support

Advice guide
Created by the Citizens Advice Bureau, Advice Guide offers information on health, employment, benefits, finance, consumer advice and your rights.

British Red Cross
The British Red Cross provides information and support for people with scars, including creams available on the NHS to help reduce the appearance of scars.

Educating and raising awareness of congenital heart defects through life experiences.

Disability Rights Commission
The Disability Rights Commission (DRC) is an independent body, established by Act of Parliament to eliminate discrimination against disabled people and promote equality of opportunity.

Good Access Guide
A guide to accessible attractions, accommodation, goods and services for people with disabilities.

Heart disease and pregnancy
US website with information for patients and physicians about the risks associated with pregnancy and management strategies for pregnant women with heart disease trying to have a baby.

Information about Disability Living Allowance - BHAS
Information on Disability Living Allowance, from the Bristol based advisory service BHAS.

MedicAlert (UK)
Medic Alert 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 help line that hospital staff can call for additional medical information.

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 purchase and contract hire of cars, scooters and wheelchairs under the motability scheme.

Radar - Royal Association for Disability and Rehabilitation
Radar is a national disability organisation campaigning for disabled people's rights and full integration into society. It offers an information and advisory service. It also administers the National Key Scheme (NKS) for accessible public toilets.

Samaritans, The
The Samaritans provides confidential emotional support 24/7 to those experiencing despair, distress or suicidal feelings.

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 appearnace of a scar.

Shopmobility operate in many towns and city centres providing electric scooters and wheelchairs for short term hire, ranging from a few hours, to several days depending on the branch. provides disabled people with information and advice on travel finance and banking health computing developments work and employment opportunities motoring as well as disabled equipment and discounts for online shopping.