News
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”...
Education & Social event – Sunday 1st October 2023, Coventry UK
The CAH Support Group are running an educational/social day at Coventry University (UK) on Sunday 1st October 2023, which will run from 11am – 4pm. The meeting will primarily be of interest to parents of children with CAH, although everyone with an interest in CAH...
Participants wanted – Exploring support needs of young people with CAH
Researchers from the Centre for Appearance Research (CAR) at the University of the West of England (UWE), Bristol are working on a project to better understand the support needs of young people with a difference in sex development (dsd) and develop support based on...
CAH patient’s survey from CAH International
Last year, CAH International held a first joint kick-off, on the basis of which working groups for research, surgery and standard of care were also formed. The Standard of Care Working Group are mainly concerned with the issue of care at the moment. In order to learn...
Network Event – 24th June 2023 – Royal Hospital for Children &Young People (Edinburgh, EH16 4SA, UK)
The Scottish Paediatric Endocrine Group (SPEG) is holding a Network Family Event on Saturday 24th June 2023 at 11:00-15:00 at the Royal Hospital for Children and Young People (Edinburgh, EH16 4SA). This is a free event aimed at families with an interest in Adrenal...
Online Survey – Self-management for patients with Adrenal Insufficiency
Wording below credit to The Pituitary Foundation: This research study is looking for adults in the UK with adrenal insufficiency. Researchers are looking to understand the factors that affect how people with adrenal insufficiency manage their condition and treatments....
Smaller dose Hydrocortisone tablets now available
Credit to the Addison's Self-Help Group : "Following years of hard work with Professor Karim Meeran, Endocrinologist at Imperial College, London, Genesis Pharmaceuticals have launched new doses of Hydrocortisone instant release tablets, including lower strengths 2.5mg...
Annual General Meeting – 15th October, 2pm UK time via MS Teams
The CAH Support Group is pleased to announce its 4th Annual General Meeting (AGM). It will be held virtually, via MS Teams, on 15th October 2022 at 2pm UK time. If you'd like to see the agenda and/or attend, please contact Sallyann (her details are on the ‘Meet the...
Article: Health Status of Children & Young People With CAH In The UK
A recently published reseach paper "Health Status of Children and Young Persons with Congenital Adrenal Hyperplasia in the UK (CAH-UK): a cross-sectional multi-centre study" in the in European Journal of Endocrinology concludes that '(there is) an increased prevalence...
Reprofutures Research Project – Material now available
Reprofutures is a co-created research project which took place from 2019-2022. Its objective was to understand what kinds of support that adults with variations in sex characteristics (VSCs) would like to receive with issues relating to reproduction, fertility,...
European Congress of Endocrinology (2021) – The Patients’ Voice – Video
Watch four leading patient advocacy groups for adrenal insufficiency (including our own Kaz Williams), with Endocrinology experts Dr Helen Simpson and Professor Simon Pearce deliver a 30-minute session on the topic: ”Support Groups for Adrenal Insufficiency Patients...
CAH Support Group Conference – 12th June, Bristol
SUNDAY 12 JUNE 2022 9.30 -16:30 FUTURE INNS HOTEL, BOND STREET, BRISTOL www.futureinns.co.uk/ Those living with CAH and their families and friends are invited to the biennial conference of CAH support group. Highlights of the event will include: Presentations from...
Holiday season? Tips & reminders from ADSHG
As we approach holiday season, we thought we'd share an excellent article from the Addison's Disease Self-Help Group (ADSHG). If you've got CAH - wherever you're going on holiday - it's always best to be prepared and know what to do in an emergency. Read the ADSHG...