Long-term health conditions (young people) resources

Association of Young People with ME (AYME)
UK charity for children and young people with ME aged 5 to 25. AYME provides support, advice and information to young people with ME and their families and friends.

Asthma UK
Asthma UK’s work includes: a helpline with asthma nurse specialist, supporting community projects and work with school to raise awareness of asthma in schools.

British Skin Foundation
Is a registered charity committed to raising funds for skin disease research. Working closely with the British Association of Dermatologists the foundation is the only charity dedicated to supporting dermatologists and skin science.

Coeliac UK
Aims to improve life for coeliacs and people with dermatitis herpetiformis. Services include a gluten-free food and drink directory, a nationwide support group network and a range of information leaflets. (Professional membership is free to healthcare providers).

Crohn’s and Colitis UK
Information and support on Inflammatory Bowel Disease (IBD), Crohn’s Disease and Ulcerative Colitis.

Cystic Fibrosis Trust
Is a UK based national charity that funds research to treat and cure CF and aim to ensure appropriate clinical care and support for people with Cystic Fibrosis

Duchenne Family Support Group
It offers support and advice and has a network of families. It publishes a regular newsletter and has information available.

Muscular Dystrophy UK
Is the largest national charity focusing on muscular dystrophy and related muscle diseases and supports over 60 different neuromuscular conditions.

Sickle Cell Society
The Society provides a wide range of services from information, advice and counselling, to financial help, holidays, briefings, seminars and training and the website has a forum to talk to other people with sickle cell.

Terrence Higgins Trust
Is the leading HIV and AIDS charity in the UK, and the largest in Europe. THT was one of the first charities to be set up in response to the HIV epidemic and has been at the forefront of the fight against HIV and AIDS ever since.

The Scoliosis Association (UK)
Is an independent support group for scoliosis in the UK. The SAUK aims to provide information about scoliosis, eliminate fear and stigma, and offer contacts for people to shared experiences.

You may also be interested in our other chronic health conditions sections, our section on children with congenital heart disease and our resources on General health and medicineMental health and wellbeingPractical matters (for information on benefits, mobility etc.) and heart.