Are you the parent of a child with adrenal insufficiency, or a young person with adrenal insufficiency yourself? Share your views to help develop national education standards and resources for sick day and emergency management of adrenal insufficiency.

This project, led by Edge Hill University and NHS clinicians, is asking you to share your experiences and views about the content and way education is provided to families on adrenal crisis and emergency Sick Day management of adrenal insufficiency. You're invited to complete their online survey, to help develop national education standards and resources for families, children and young people.

The team are also looking for families to join an online discussion group to share their views. This discussion should last about an hour. To find out more please get in touch with the team through the details below or click on this link.

Your support of this online survey will play an integral part in the future of the British Society for Paediatric Endocrinology and Diabetes (BSPED) national education standards. Thank you!

Click to find out more and take part

Who can take part:

• People who live and receive medical care in the United Kingdom.
• People who have adrenal insufficiency themselves and are currently aged between 10-16 years old.
• Parents of children with adrenal insufficiency who are currently aged 0-16 years.
• A parent and child from the same family can take part - more information on the survey link.

Please only take part if you are in the age range. This is to provide insight into current practice and challenges.

How to take part:

• Follow the link or the QR code to find out more about the study and to take part.
• The survey should take roughly 20 minutes.
• The survey closes on 31 October 2024
• To take part in the hour online discussion group, please contact Lucy Bray on [email protected] or text 07763667185.

The study is entirely voluntary and participants are free to withdraw at any time. Your answers will be anonymous with no possibility to trace responses back to individuals.

	If you have any questions about this study, please contact Lucy Bray on [email protected] or text 07763667185
	Click here to download the survey poster
	Complete the online survey

Thank you, Lucy Bray, Dr Jarod Wong and the whole team, for undertaking this research for the benefit of those living with Addison’s and adrenal insufficiency.

---

Addison's disease and adrenal insufficiency can strike at any age. We provide support and information around the specific issues facing children, teenagers and their families. From managing school to moving out and transitioning to hospital adult services.

• Visit our children and young persons page for links to all our resources
• Read our booklet 'When a student has Addison's: a guide for schools and parents' 
• Talk to other families on our online forum
• Read Blogs from other young people - such as Adam the AI warrior aged 12, or Kristian aged 25.

Whether you're newly diagnosed or have lived with the condition for years - please join our community and support our cause! You'll receive the latest expert advice, guidance and ADSHG news, whilst being part of our inspiring and supportive community. Become a member today! 

Join the ADSHG 

Stay in touch! Follow us on X/Twitter, Facebook, Instagram, LinkedIn, Threads, TikTok and YouTube.