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!
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.
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.
Updates from the CAH blog
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 18th December 2020 The Society of Endocrinology has issued a statement about COVID-19 vaccines - read...
The Society for Endocrinology has released a statement on COVID-19 vaccines for patients with endocrine conditions - which states: "We are not aware of any specific side effects of a COVID-19 vaccine that would be unique to people with endocrine conditions" and that...
The Support Group will be running a virtual Adult Meeting on Sunday 13th December at 11am (UK time). This is a great chance to meet other adults with CAH and have a friendly chat. If you would like to join us, please contact Kaz (her details are on the 'Meet the Team'...
Article: Recommendations of patients and families of girls with 46XX CAH in the UK regarding the timing of surgery
The article, published 23rd November 2020, concluded that 'expert families and patients in the UK who have had CAH surgery, recommend surgery in the first few years of life vs. adulthood' and that while there is a 'selection bias', this finding 'may support...