News
Patient Survey: Improving the Delivery of Genetic Results
CAH is a rare genetic condition and many of us will have received results of genetic testing at some point on our CAH journey. When you received these reults might not have been at the best time - pehaps you received genomic test results while you were driving, on...
Webinar: Finding Your Way – A Parent’s Guide to Rare Disease
Join the NHS South East Genomic Medicine Service and Unique on Wednesday 16th September 2026 at 12-1pm on Teams to celebrate the launch of “Finding Your Way: A Parent's Guide to Rare Disease”. Written by parents, for parents, this new guide offers practical support,...
New report highlights access gap for innovative medicines
The CAH Support Group recently provided input into a new Medicines Australia report about access to innovative medicines in Australia. The report, now published, warns that Australian patients are missing access to some innovative medicines available in comparable...
Help Shape New UK Sick Day Guidance for Young People with Adrenal Insufficiency
Young people with adrenal insufficiency (including CAH and Addison's disease) and parents/carers are being invited to help shape new UK-wide resources on sick day rules and emergency management. The project is being led by Edge Hill University in partnership with the...
Article: Adult Quality of Life with CAH
A new study published in Endocrine Connections explores the lived experiences of adults with congenital adrenal hyperplasia (CAH) and the wide-ranging impact the condition can have on quality of life. Through in-depth interviews with adults living with CAH as well as...
Liquid Hydrocortisone Discontinued in the UK
Liquid hydrocortisone injections have been discontinued in the UK, affecting emergency treatment for people with adrenal insufficiency. This follows the supply shortage reported in February 2025 -...
Medicine security – a national UK priority.
Concerns about medicines shortages in the UK have been highlighted in recent analysis from the House of Lords Public Services Committee and the Royal Pharmaceutical Society. The House of Lords Public Services Committee warns that medicines supply should be treated as...
2026 CAH Support Group Conference, 28th June, Sheffield
SUNDAY 28th JUNE 2026 9.30 -16:00 The Old Rectory, Handsworth, Sheffield, S13 9BZ theoldrectoryhandsworth.co.uk Those living with CAH and their families and friends are invited to the biennial conference of CAH Support Group. Visit our online booking page here to find...
A selection of articles from around the world in 2025
Here’s a selection of three articles from around the world in 2025 about CAH. They cover treatment methods and long term outcomes for people with CAH - making for interesting reading for anyone interested in or affected by CAH. These articles are not a recommendation...
COVID-19 Information & Guidance
As new guidance and information becomes available, we will do our best to link to it below - please check here for updates. If you contract COVID-19, remember to adhere to sick-day rules. Always seek guidance from your GP, endocrinologist or other appropriate medical...
Annual General Meeting – 2nd November, 3pm UK time in Oxford
The CAH Support Group is pleased to announce its 7th Annual General Meeting (AGM). It will be held in person at The Lighthouse, Oxford on Sunday 2nd November 2025 at 3pm UK time. A virtual Teams link is available on request. If you'd like to see the agenda and/or...
Survey: Help Improve Rare Disease Research
Developing quality statements for rare disease via consensus across the rare disease community The Rare Disease Quality Statement Project is gathering insights from patients, caregivers, and researchers to improve rare disease research and support. Your feedback is...