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 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”...
Fundraiser in aid of Living with CAH & 120Marathonman Charities
The last week of Marathonman is here - almost 120 marathons completed For more information, see the link below. 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...
Article: Acute Illness and Death in Children With Adrenal Insufficiency
A recently published article from Royal Manchester Children’s Hospital, the University of Manchester, and Manchester Royal Infirmary concludes that "during intercurrent illness episodes, parents reliably increased oral hydrocortisone doses but rarely administered...
Petition: Create a publicly owned manufacturer for off-patent, generic drugs in the UK
Price gouging is where companies substantially raise prices above costs of production and investment, often due to a lack of competition. Generic drugs are non-brand, off-patent medicines. They benefit from a legal loophole, facing much less price regulation than...
Article: A review of menstrual sex education and management in women with congenital adrenal hyperplasia
A recent article titled "A review of menstrual sex education and management in women with congenital adrenal hyperplasia", concludes that "from a research perspective, championing the development of evidence-informed products that are accessible to the parents of...