News
Drug shortage alert: injectable hydrocortisone
The Department of Health and Social Care (DHSC) has confirmed an upcoming shortage of hydrocortisone sodium phosphate for emergency injection kits from the end of February 2025, with supply expected to resume in May 2026. Find more information about this on the...
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...
New NICE Guidelines – identification and management of adrenal insufficiency
The publication of new NICE (National Institute for Health and Care Excellence) guidelines - "Adrenal insufficiency: identification and management" marks a significant advancement in the management and treatment of primary, secondary and tertiary adrenal...
Focus Group: 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...
Treatment Research Update – Crinetics Atumelnant (CRN04894)
Atumelnant (CRN04894) is in development by Crinetics for the treatment of congenital adrenal hyperplasia (CAH) and ACTH-dependent Cushing's syndrome. It is an oral, selective ACTH antagonist. Atumelnant is now in Phase 2 of development and you can read the latest...
European Hormone Day – 24th April 2024 – Because Hormones Matter
European Hormone Day returns for a third time on Wednesday, 24 April, uniting the endocrine community across Europe and beyond to raise awareness of the vital role of hormones in health and disease – #BecauseHormonesMatter. Many people have an idea of what hormones...
Article: Service evaluation suggests variation in clinical care provision in adults with CAH in the UK and Ireland
The study, published March 2024, with two of the Group's medical advisors (Faisal Ahmed & Nils Krone) and our Chair, Sue Elford as as some of the authors, concludes that: "Differences in current management of CAH continue to exist. It appears crucial to objectify...
Genomics England – The Generation Study – CAH included
The Generation Study is being carried out by Genomics England in partnership with the NHS. It is exploring the possible use of genome sequencing in newborn babies to identify a wide range of rare genetic conditions alongside the routine newborn blood spot screening....
2024 CAH Support Group Conference, 9th June, Tamworth
SUNDAY 9 JUNE 2024 9.30 -16:00 DRAYTON MANOR RESORT, TAMWORTH, B78 3TW www.draytonmanor.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 out more or book...
Online Meeting for Adults with CAH – 3rd February 2024, 10:30-12:30 UK time
This is an opportunity to meet other adults with CAH in a safe and supportive environment, where we share experiences, learn about current developments and have the opportunity to socialise with others in the CAH community. We're pleased to announce that we'll be...
Research – Emotion Perception in Youth with CAH
"Altered Emotion Perception Linked to Structural Brain Differences in Youth With Congenital Adrenal Hyperplasia" From Volume 25, Fall 2023 Cares Foundataion Newsletter "Conclusion: Findings suggest that youth with CAH perceive emotive stimuli as more unpleasant....
Annual General Meeting – 26th November, 10:30am UK time via MS Teams
The CAH Support Group is pleased to announce its 5th Annual General Meeting (AGM). It will be held virtually, via MS Teams, on 26th November 2023 at 10:30 am UK time. If you'd like to see the agenda and/or attend, please contact Sallyann (her details are on the ‘Meet...