News
What you should know about COVID-19 – updated 4th February
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 4th Feburary 2021 The Addison's Disease Self-Help Group has published guidance in conjuction with a...
Call out for young women with CAH!
DSD Families are recruiting young adults aged 16-25 with experience of variations of sex development to help shape and develop some of their peer psychosocial support ideas. Since CAH falls under the variations of sex development umbrella, they would like to speak to...
Society for Endocrinology statement on COVID-19 vaccines
The Society for Endocrinology has released a statement on COVID-19 vaccines for patients with endocrine conditions - which states: "We are not aware of any specific side effects of a COVID-19 vaccine that would be unique to people with endocrine conditions" and that...
Virtual Adult Meeting – Sunday 13th December, 11am UK time
The Support Group will be running a virtual Adult Meeting on Sunday 13th December at 11am (UK time). This is a great chance to meet other adults with CAH and have a friendly chat. If you would like to join us, please contact Kaz (her details are on the 'Meet the Team'...
Article: Recommendations of patients and families of girls with 46XX CAH in the UK regarding the timing of surgery
The article, published 23rd November 2020, concluded that 'expert families and patients in the UK who have had CAH surgery, recommend surgery in the first few years of life vs. adulthood' and that while there is a 'selection bias', this finding 'may support...
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...