Welcome to the CAH Support Group

We support people with Congenital Adrenal Hyperplasia, their families and friends.

WHO WE AREDONATE
Survey: Lived experience & Quality of life
Call for participants - "Exploring the lived experiences and quality of life of individuals...
New NICE Guidelines – identification and management of adrenal insufficiency
The publication of new NICE (National Institute for Health and Care Excellence) guidelines -...

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.

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.

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

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”...

Survey: Lived experience & Quality of life

Survey: Lived experience & Quality of life

Call for participants - "Exploring the lived experiences and quality of life of individuals affected by CAH" If you're 18 years and over and living with CAH, tell us how CAH affects your life in an individual discussion held at a convenient time face-to-face or...

Survey: Paediatric Adrenal Insufficiency Education

Survey: Paediatric Adrenal Insufficiency Education

This project, led by Edge Hill University is working with NHS clinicians to develop national education standards and resources for sick day/emergency management of adrenal insufficiency in children and young people. The project would like to hear the views of parents...

The CAH Support Group is affiliated with Society for Endocrinology, an organisation that supports clinicians, scientists and nurses who work with hormones throughout their careers. They engage policy-makers, journalists, patients and the public with hormone science to encourage informed health decisions, and to demonstrate the value of endocrinology to the wider world and also maintains a public information website, You and Your Hormones.

All content on this website (livingwithcah.com) is copyright the CAH Support Group unless otherwise stated.

The CAH Support Group cannot be held responsible for the content provided by any external links unless stated.

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