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...
Request for feedback: Proposed policy for gonadal & genital surgery for infants and children with DSD
NHS England has proposed a new policy around gonadal and genital surgery in infants and children with DSD (difference in sex development). A key part of the proposed policy is that ‘surgery will not be available as a routine treatment option.... until the individual...
Survey: COVID-19 and Adrenal Insufficiency
The CAH Support Group has been working as part of the Adrenal Causes Together (ACT) group for the last 8 months and one of the many positive outcomes of this has been the development of this survey - 'COVID-19 and Adrenal Insufficiency'. The survey is to help...
Virtual Family Meeting – 22nd November, 10am UK time
The Support Group will be running a virtual Family Meeting on Sunday 22nd November at 10am (UK time). We will have Dr Nils Krone from Sheffield online with us for the first hour, to answer any questions you may have, and we will have time afterwards to chat and...
Updated NHS Steroid Card Released
A new NHS steroid card has been released - it's been developed by the Society for Endocrinology (SfE), Royal College of Physicians (RCP) and NHS England and NHS Improvement (NHSE&I), to be carried by patients at risk of adrenal crisis. How do I get a copy of the...
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