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!
Providing support 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 to aid research and development into new and revised treatment methods and medication.
Answering your questions
We run regular events including conferences and regional meetings so members can meet others living with the condition. There’s always someone to talk to!
Network of medical advisors
Our group of medical advisors include consultant endocrinologists, nurses, surgeons and psychologists who specialise in treating all types of CAH.
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
What you should know about COVID-19 – updated 10th August 2021
Guidance from other organizations is continually being issued and we'll do our best to link to them below - please keep checking back here for more updates. UPDATE 10th August 2021 Article: “ChAdOx1 SARS‐CoV‐2 vaccination: A putative precipitant of adrenal crises”...
Support Group Meeting: London, June 2025
SUNDAY 8 June 2025 11:00-16:00 NVCO, London, N1 9RL A friendly and welcoming space for those with CAH, their families and friends to meet and learn more about the condition. If you are a member of the CAH Support Group, you will receive a password in the latest...
Webinar: The Art of Parenting While Sick – 27 March
The Addison's Disease Self-Help Group (ADSHG) is hosting a webinar titled "The Art of Parenting While Sick" on March 27, 2025. Led by Hilary Hodge, who personally manages her own adrenal insufficiency, the session aims to equip parents with effective, age-appropriate...
Drug shortage alert: injectable hydrocortisone
The Department of Health and Social Care (DHSC) has confirmed an upcoming shortage of hydrocortisone sodium phosphate for emergency injection kits from the end of February 2025, with supply expected to resume in May 2026. Find more information about this on the...