If you're a young person with adrenal insufficiency, including Addison's, or the parent of a young person with the condition, we've got an exciting opportunity for you to get involved and make a real difference!
Edge Hill University, working with the British Society for Paediatric Endocrinology and Diabetes (BSPED), are creating brand new UK-wide resources on sick day and emergency management for children, young people and parents, and they want your help to get it right.
The Addison's Disease Self Help Group is proud to be funding this work, with fellow patient support groups Living with CAH and The Pituitary Foundation.
Why this matters
The work is now at an exciting new stage, and the team need advisors with real experience of adrenal insufficiency to help make sure the resources actually work for young people and families like you.
It's all done online, so no travelling required! You'll be helping to shape resources that could support thousands of other young people and families across the UK, both now and for years to come.
Who can take part:
- People who live and receive medical care in the United Kingdom.
- Young people aged 10-18 years old with adrenal insufficiency.
- Parents of children of any age with adrenal insufficiency.
You do not need to have done anything like this before, and you can join in from home (just a few hours of your time!)
How to take part:
- Follow the link or the QR code to find out more.
Are you a healthcare professional? Download the poster and share it with your patients.
Please contact Lucy Bray on brayl@edgehill.ac.uk for more information.
Thank you, Lucy Bray, Dr Jarod Wong and the whole team, for undertaking this work for the benefit of those living with Addison’s and adrenal insufficiency.