Happy Addison's Disease Day! A day for everyone who is affected by Addison's disease and adrenal insufficiency, to come together to raise awareness and celebrate this incredible community.

This year we're focusing on the #RareReality of living with a rare health condition, shining a light on being an 'expert patient', whilst also celebrating our incredible community. Read on to find out more!

Join our Twitter chat today at 10.30am on this year's topic "The #RareReality of an expert patient." Our Twitter chats are a great opportunity to swap tips and knowledge with others, as well as asking our expert panel your questions.

So please join the conversation from 10.30am on @AddisonsUK, using the hashtag #AddisonsQA. If you can't make it, no worries! A summary of the key pieces of advice will be in our members' magazine and on our blog. 

Join us on Twitter

We learn so much from each other's stories, experiences and can take comfort that we're not alone. To raise awareness around the need to be prepared as an expert patient, Dan bravely shares his emergency experience with us. 

"Know what you’re going to do in case of an adrenal crisis. Know where things are. Know what you need to tell medical professionals... Be firm but polite. You know your body. You will know when things don’t feel right. Take an extra dose and make sure you know where your kit is."

Read Dan's blog: my adrenal crisis & hospital admission

As expert patients, we also have to educate those around us. To help lighten this burden on you and your loved ones, we've created resources to support you. 

New Clinical Guidance for your appointments

Consultation Reference Guide endorsed by the Society for Endocrinology is now available. Preparing for appointments helps you get the most out of those vital minutes, as well as easing any worries you may have. This reference guide helps prompt you and your endocrine specialist on important issues. Read more on our website.

Educating GPs - free RCGP adrenal insufficiency course

To tackle the lack of knowledge and education for GPs, we've launched with the Royal College of General Practitioners (RCGP), a free GP education module: “Adrenal insufficiency with a focus on Addison's disease”. The module provides your GP with information on your regular care, such as the need for three monthly prescriptions for essential steroid medication. This Addison's Disease Day we're asking you to download and share our RCGP poster with your GP, so they can complete this free CPD, improving your care.

Exclusive access to 'Advanced Practice in Endocrinology Nursing' textbook

Publishers Springer are generously giving free access to the  'Advanced Practice in Endocrinology Nursing' and their two chapters on adrenal insufficiency, until 12 June 2023. This textbook is a multidisciplinary collaboration from 118 authors across the globe and includes 69 chapters. It is the first ever endocrine nursing book providing a comprehensive resource for paediatric and adult nurses. Thank you to Springer and Dr. Sofia Llahana for organising this exclusive contribution to Addison's Disease Day.

Enjoy these fascinating chapters:

  1. Diagnosis and Management of Adrenal Insufficiency in Children and Adults
  2. Prevention and Management of Adrenal Crisis in Children and Adults

Take part in research - share your expert voice

Finally, please use your expert patient voice to contribute to research. Two projects we're currently supporting need your input through online surveys. Click here to contribute to adrenal crisis research. And here for research development into a cortisol sensor. Thank you!

Did you catch Giulia Bould speaking about Addison's on BBC Radio Merseyside? Giulia, who is a sports presenter for BBC Radio Merseyside, spoke about her diagnosis, how she paces her energies to balance her busy job, what being an expert patient means to her and how she will be taking part in our Twitter Chat today!

You can listen to the interview on BBC Sounds (interview starts at 1:30) and hear more from Giulia in her blog 'Broadcasting far and wide'. Thank you so much Giulia for raising awareness and sharing your story!

Listen to Giulia's interview on BBC Sounds

Philippa from the ADSHG spoke to National Voices about the ADSHG and the awareness needed for those living with a life-threatening rare condition and the role of the expert patient.

Read Addison's Disease Day: support for a rare condition

Keep joining us in our #ShareYourKit campaign! It's important to talk about injection kits and educate those close to us. We're asking you to share pictures of your hydrocortisone emergency injection kit to educate, remind and encourage people to kit their kits with them at all times.

So snap a photo and post on your social media using the hashtag #ShareYourKit (making sure to tag the ADSHG charity social media accounts too!) If you would like to feature on our website like Sue, Shona, Fiona, Bexi, BethHannah and Stuart - send us your #ShareYourKit!

From all of us at the ADSHG, thank you for your support. Our work simply wouldn't be possible without you, our volunteers and our fantastic fundraisers. We're incredibly proud of our amazing community and how we continue to work our way forward together. Thank you for being part of the ADSHG. 

Happy Addison's Disease Day everybody and have a lovely bank holiday! 

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

Connect on social media! Follow us on X / TwitterFacebookInstagramLinkedIn, Threads, TikTok and YouTube.