Parents of children with congenital heart disease


British Heart Foundation 
The British Heart Foundation (BHF) is the leading national charity fighting heart and circulatory disease. The BHF funds research, education, life-saving equipment and helps heart patients return to a full and active way of life.

Children's Heart Federation 
Provides a range of information about all aspects of bringing up heart children. The charity runs a national helpline for both families and professionals involved with heart children and can put parents in touch with appropriate federated groups around the UK.
Down's Heart Group
A UK charity which offers support and information to families of children with Down’s Syndrome and congenital heart defects. 
HeartLine Association  
A national support organisation for children with heart conditions and their families. Provides contact to other families in similar situations, information on all aspects of having a heart child, a quarterly newsletter and offers support through a national network of groups
Little Heart Matters
A charity based in Birmingham which offers support and information to families of children with hypoplastic left heart syndrome. Their web site provides details of parents around the world with hypoplastic left heart syndrome children.
Max Appeal
This charity provides information on their website which has been written by parents to support parents and families of children with 22q11.2 deletion, VCFS and Di George Syndrome.
The Somerville Foundation
The Somerville Foundation focuses on those born with a heart condition (congenital), providing practical and emotional support, and enabling them to take control of their lives and manage their own heart condition
Tiny Tickers
Is an independent, national charity, led by concerned parents and supported by medical experts in the UK and Europe, dedicated to improving the detection, care and treatment of congenital heart problems in babies before birth.

Looking after children with congenital heart disease: 39 Questions and Answers
Compiled by with the British Heart Foundation and the Children's Heart Foundation.
Please download our Heart resources. You may also be interested in our resources on General health and medicineMental health and wellbeing and Practical mattersPregnancy and Bereavement & Dying


Please use the form below to tell us what you think of the site. We’d love to hear about how we’ve helped you, how we could improve or if you have found something that’s broken on the site. We are a small team but will try to reply as quickly as possible.

Please note that we are unable to accept article submissions or offer medical advice. If you are affected by any of the issues covered on this website and need to talk to someone in confidence, please contact The Samaritans or your Doctor.

Make a Donation to

Find out more about how you can help us.

Send to a friend

Simply fill out this form and we'll send them an email