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 Blog Posts
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”...
Fundraiser in aid of Living with CAH & 120Marathonman Charities
The last week of Marathonman is here - almost 120 marathons completed For more information, see the link below. Join Graham Wilson and his fantastic team in as many or as few steps as you would like to. He will walk an average of 60,000 steps per marathon giving a...
Article: Acute Illness and Death in Children With Adrenal Insufficiency
A recently published article from Royal Manchester Children’s Hospital, the University of Manchester, and Manchester Royal Infirmary concludes that "during intercurrent illness episodes, parents reliably increased oral hydrocortisone doses but rarely administered...
Petition: Create a publicly owned manufacturer for off-patent, generic drugs in the UK
Price gouging is where companies substantially raise prices above costs of production and investment, often due to a lack of competition. Generic drugs are non-brand, off-patent medicines. They benefit from a legal loophole, facing much less price regulation than...
Article: A review of menstrual sex education and management in women with congenital adrenal hyperplasia
A recent article titled "A review of menstrual sex education and management in women with congenital adrenal hyperplasia", concludes that "from a research perspective, championing the development of evidence-informed products that are accessible to the parents of...