Welcome to the CAH Support Group

We support people with CAH, their families and friends.



We are working to provide those who are living with CAH the most up-to-date information as possible.

Our news item here provides links and information from various sources.

Please keep checking back here for more information – we’ll add it as soon as we can. 

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!

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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.

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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.

About us

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.


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 News

Updates from the CAH blog

What you should know about COVID-19 – updated 4th February

What you should know about COVID-19 – updated 4th February

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 4th Feburary 2021 The Addison's Disease Self-Help Group has published guidance in conjuction with a...

Fundraiser in aid of Living with CAH & 120Marathonman Charities

Fundraiser in aid of Living with CAH & 120Marathonman Charities

Join Graham Wilson and his fantastic team in as many or as few steps as you would like to. He will walk an average of 60,000 steps per marathon giving a total of 7.2 million steps throughout the 120 days. 120 marathons taking in the 48 English counties, Scotland,...

Webinar: Accessing Mental Health Services – 10th May, 7pm UK time.

Webinar: Accessing Mental Health Services – 10th May, 7pm UK time.

WEBINAR: Accessing Mental Health Services Interconnected UK (Icon UK) is pleased to invite you to a webinar to learn more about mental health services in the public, private and third sectors in the UK. Some people with variations in sex characteristics have had good...

Call out for young women with CAH!

Call out for young women with CAH!

DSD Families are recruiting young adults aged 16-25 with experience of variations of sex development to help shape and develop some of their peer psychosocial support ideas. Since CAH falls under the variations of sex development umbrella, they would like to speak to...