Welcome to the CAH Support Group
We support people with Congenital Adrenal Hyperplasia, their families and friends.
Congenital Adrenal Hyperplasia (CAH)
What is CAH?
CAH occurs approximately once in every 15,000 people worldwide. It is an inherited condition which prevents the adrenal glands functioning correctly. To stay healthy, people with CAH must take daily life-long medication to replace the hormones which their adrenal glands don’t make.
How we help
The CAH Support Group is run by people who, between them, have been living with CAH for over 100 years!
Supporting CAH since 1991
The group was formed by our Chair, Sue, not long after her son was born with the condition.
Fundraising for research
We raise money for research and to develop treatment methods and medication.
Answering your questions
We run regular events so members can meet others living with the condition. There’s always someone to talk to!
Medical advisors
We work with CAH specialists including endocrinologists, nurses, surgeons and psychologists.
The CAH Support Group is a charity run by its members.
The support group was formed in 1991. Our aim is to give support to people with CAH and their families and friends, to increase awareness of the condition among the public and the medical profession, and to raise funds to support research.
Fundraising
CAH needs your help
Like many charities the CAH Support Group need to ask the public for money. We rely on public generosity – an enduring feature of our group, but one that can never be taken for granted.
You can read all the books and see all the doctors, but talking to someone who’s actually been there and understands how you feel is a huge reassurance.
Latest articles
See all articles here
Webinar: Finding Your Way – A Parent’s Guide to Rare Disease
Join the NHS South East Genomic Medicine Service and Unique on Wednesday 16th September 2026 at 12-1pm on Teams to celebrate the launch of “Finding Your Way: A Parent's Guide to Rare Disease”. Written by parents, for parents, this new guide offers practical support,...
New report highlights access gap for innovative medicines
The CAH Support Group recently provided input into a new Medicines Australia report about access to innovative medicines in Australia. The report, now published, warns that Australian patients are missing access to some innovative medicines available in comparable...
Help Shape New UK Sick Day Guidance for Young People with Adrenal Insufficiency
Young people with adrenal insufficiency (including CAH and Addison's disease) and parents/carers are being invited to help shape new UK-wide resources on sick day rules and emergency management. The project is being led by Edge Hill University in partnership with the...