The Somerville Foundation (Formerly the GUCH Association) is a national charity set up to support young people and adults born with congenital heart disease, providing practical and emotional support, and enabling them to take control of their lives and manage their own heart condition. Their website provides much needed free support for patients, their families and friends. There is also a free patient phone or email helpline: 0800 854759 (Answerphone only at weekends) or email@example.com. Other resources include GUCH News, their quarterly newsletter, which is sent free to all members, and there are information leaflets.
They have also produced a Personal Health Passport booklet for you to keep information about your condition. One will be given to you when you first come to the clinic, but if you have lost one or not received one please contact us and we will arrange for one to be sent to you.
The Pulmonary Hypertension Association (PHA UK) is a UK charity especially for people with pulmonary hypertension (PH). Their mission, to help improve the lives of people with PH, and supporting the PH community in the UK. Their website provides resources and support.
Max Appeal is a UK registered charity supporting families affected by 22q11.2 deletion, DiGeorge syndrome, and VCFS. The charity run events, provide information and resources, and support research to expand knowledge of the condition.
Noonan Syndrome Association (NSA) provides comprehensive support of those affected by Noonan Syndrome, through professional nurse services (telephone and email helpline), national and regional events and through publications. They support medical research to advance improvements in understanding and in the care and management of those affected or at risk.
Turner Syndrome Support Society is a national charity caring for the needs of those with Turner Syndrome throughout the United Kingdom. They offer support, advice and information to women and girls with Turner Syndrome and their families.
The Williams Syndrome Foundation is a UK group aiming to be the first point of contact for individual with Williams Syndrom, their families and professionals needing support and information regarding the syndrome.
The British Heart Foundation is a large charity with a mission is to win the fight against cardiovascular disease. It has many resources and publications for young adults with congenital heart disease. We used their Transition packs, a resource for 13 – 19 year old heart patients to help them make the journey from child to adult care.
The Down’s Syndrome Association have specialist advisers who can provide you with information and support on issues such as health, social care, benefits and education for people with Down’s syndrome.
The Marfan Foundation provide a supportive community for everyone affected by Marfan syndrome and related disorders. There are some good downloadable information packs on other aortopathies including Loeys Dietz syndrome, Ehlers Danlos and bicuspid aortic valve.
The Marfan Trust website includes information on the medical aspects of Marfan syndrome; advice and guidance on living with Marfan syndrome; updates on their latest research projects and publications and ways to support the Trust’s important work.
Local activity programmes are now more easy to find, thanks to a new NNUH page designed by the physiotherapy department for use by patients, relatives, carers and hospital staff, to make it easier to access information about local physical activity opportunities.
Some people are very self-conscious about their scars. Changing Faces charity supports and represents people who have conditions or injuries which affect their appearance. The Skin Camouflage service run by Changing Faces help people assess skin tone and match it with skin colour make up to cover the scar. The camouflage cream is then available on prescription.
To find out more call Call 0300 0120 276 or Email firstname.lastname@example.org.
There are many smart phone apps (applications) available, geared towards congenital heart disease, but they are of varying quality, even if they have a CE mark please talk to us if you are thinking of downloading one.