Welcome to the CAH Support Group
We support people with CAH, their families and friends.
CORONAVIRUS INFORMATION
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.
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 News
Updates from the CAH blog
What you should know about COVID-19 – updated 24th April
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 24th April 2020 The Lead Editors of the European Journal of Endocrinology (EJE) have commissioned a...
Request for feedback: Proposed policy for gonadal & genital surgery for infants and children with DSD
NHS England has proposed a new policy around gonadal and genital surgery in infants and children with DSD (difference in sex development). A key part of the proposed policy is that ‘surgery will not be available as a routine treatment option.... until the individual...
Survey: COVID-19 and Adrenal Insufficiency
The CAH Support Group has been working as part of the Adrenal Causes Together (ACT) group for the last 8 months and one of the many positive outcomes of this has been the development of this survey - 'COVID-19 and Adrenal Insufficiency'. The survey is to help...
Virtual Family Meeting – 22nd November, 10am UK time
The Support Group will be running a virtual Family Meeting on Sunday 22nd November at 10am (UK time). We will have Dr Nils Krone from Sheffield online with us for the first hour, to answer any questions you may have, and we will have time afterwards to chat and...