News
What you should know about COVID-19 – updated 24th April
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 24th April 2020 The Lead Editors of the European Journal of Endocrinology (EJE) have commissioned a...
Adrenal Causes Together – International Collaboration for Endocrine Conditions
The CAH support group has been working with a group called ‘Adrenal Causes Together’ during the Covid-19 pandemic set-up by the Addison’s Disease Self-Help Group. Patient support groups representing a range of different conditions from UK, Europe, Australia and the US...
NCEPOD study seeks opinions on transition from child to adult heathcare
NCEPOD (National Confidential Enquiry into Patient Outcome and Death) are developing a study aimed at service users to look at the transition of care from child to adult healthcare services. If you're interested in taking part - read more on NCEPOD's website. Recent...
Vote for ‘Journey of Hope’!
A message from 'Same but Different': ‘Journey of Hope’ is a short film offering a glimpse in to the lives of families where children have received a rare genomic diagnosis. In a world where labels and diagnosis are often framed negatively, this film highlights the...
New guidelines for the management of adrenal insufficiency during operations published
The Society for Endocrinology, the Association of Anaesthetists and the Royal College of Physicians have published new "Guidelines for the management of glucocorticoids during the peri-operative period for patients with adrenal insufficiency." You can access the...
Donate with Bank Transfer through JustGiving
You can now send donations to us using bank transfer through JustGiving. No setup is necessary and the process using bank-grade security. Read more at JustGiving. Recent Blog Posts
Family Meeting in Newry, Ireland – 9th February, 2-6pm
The annual Ireland family meeting will be held on Sunday, 9th February from 2pm - 6pm at Bessbrook Community Centre, Ireland. Places are limited so for more information and to book a place, please contact Jo & Mark - our area coordinators for Ireland - through the...
CAH treatment may be linked to lower bone mineral density
Higher glucocorticoid doses for adults with CAH may be associated with lower bone mineral density, especially among women and those prescribed prednisolone, according to findings published in Clinical Endocrinology. Read more on Healio. Recent Blog Posts
Coffee & Share Meeting with ‘Same But Different’ – 30th January, Mold
Same But Different are hosting a Coffee and Share meeting in Mold on 30th January, where anyone affected by rare disease can meet to chat and share their experiences over a cup of coffee and a slice of cake. Glow Beauty will be present too, and will treat guests to a...
Survey for women with CAH aged 25-64.
Are you a woman with a diagnosis of the condition congenital adrenal hyperplasia (CAH) aged between 25 and 64 years? We are endocrinology doctors at Newcastle University in the UK investigating whether some women with this condition might find it more difficult to...
A new way to support us – Amazon Smile
As well as donating directly or fundraising through JustGiving, you can now support us every time you shop on Amazon.co.uk. Through Amazon Smile, you can donate 0.5% of the purchase price to us at no extra cost to you. Simply select 'Congenital Adrenal Hyperplasia...
NHS England and NHS Improvement seeks patients and carers to work with the Quality Surveillance Team
A message from NHS England & NHS Improvement: Did you know that you, as a patient or carer, you can join a team who work to help maintain and improve congenital gynae anomalies services in our hospitals? NHS England and NHS Improvement is calling for patients...