1st March 2020

Yesterday was Rare Disease Day, a chance for the rare disease community to join forces to raise awareness of rare diseases and their impact on peoples’ lives.

We are delighted that our article "Think Addison's disease - save a life", written to raise awareness of the subtle symptoms of Addison's and the national guidance to diagnose Addison's, is featured in today's Guardian newspaper Rare Diseases supplement!

This is part of our aim to tackle understanding of Addison's and the delay in diagnosis so many of us have experienced and marks the start of our collaboration with CoMICs on our diagnosis poster and 3-part video series.


The ADSHG are featured alongside Genetic Alliance UK, Same but Different, Findacure, Rare Disease International, Great Ormond Street Hospital Children's Charity and EURORDIS, so we are in excellent company! Please pick up a copy of The Guardian newspaper to read these fantastic articles from across the rare disease community.

Think Addison's disease - save a life

The aim of our article is highlight to the general population how Addison's disease can affect people of all race and age and the symptoms may be subtle. Within the article we explain how the initial symptoms of Addison’s are non-specific and can fit other conditions. Individually each symptom may be discounted or explained away, whilst the person remains undiagnosed.

People still die of adrenal crisis, which is entirely preventable. Healthcare professionals need to think of Addison’s and recognise it earlier so that a diagnosis can be made before a crisis develops. In our article we link to national guidance, highlight the new steroid emergency card and diagnostic tests to undertake if Addison's is suspected. Delayed diagnosis in rare disease is not uncommon, as highlighted in the new UK Rare Disease Framework. This is why we must continue with our mission to raise awareness.


Watch "Addison's Disease Episode 1: What is Addison's Disease?" 

To accompany our image, watch the first in our new 3-part video series where we'll be looking at:
❓What is Addison’s disease. 
💊 How to diagnose and treat Addison’s disease. 
🆘 What is adrenal crisis and how to manage it.

Thank you to the expert Endocrine review panel for the video included ADSHG Trustee Dr Helen Simpson and Addison's Clinical Advisory Panel (CAP) member Professor Wiebke Arlt; and to Society for Endocrinology for also endorsing this work.


Subscribe to the ADSHG YouTube channel to be notified when the new videos are released!

Sharing the voices of others living with Addison’s and adrenal insufficiency

Over on our Instagram account, we shared some of the amazing people in our community with their quotes about their rare reality of living with Addison's and adrenal insufficiency. We want you to know you are not alone. Thank you to everyone who shared their story with us to raise awareness on Rare Disease Day!


Every year, ADSHG funds exceptional research with the potential to change the lives of people with Addison’s disease and adrenal insufficiency, made possible thanks to your support and fundraising.

After many impressive submissions, we are delighted to be award research grant funding to:

  • Mendelian - The Alfred Potter Memorial Award 
  • SOLUtion Medical - The Professor John Wass Emergency Medicine Award 

Mendelian and SOLUtion Medical are tackling head on some of the biggest issues to current safety and quality of life for people with Addison's or adrenal insufficiency. Mendelian, with their development of MendelScan software to speed up diagnosis of rare diseases and improve patient care. And SOLUtion Medical, with their development of epi-pen style, one-step injector for delivering the hydrocortisone emergency injection in an adrenal crisis.

It is thanks to you we able to provide these annual research awards to fund vital research projects, to change the lives of people with Addison’s disease and adrenal insufficiency for the better.

CoMICs websiteTwitter - YouTube - Instagram 

Special thanks to CoMICs team members:

Dr Punith Kempegowda,

Wellcome Trust Clinical Research Fellow, Institute of Metabolism and Systems Research; University of Birmingham, UK

Dwi Delson,

3rd year Medical Student, University of Dundee, UK

Emma Ooi,

5th year Medical Student, Royal College of Surgeons in Ireland, Malaysia Campus

Soon Chee Yap,

3rd year Medical Student, University of Dundee, UK

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