What we do

The Addison’s Disease Self-Help Group (ADSHG) is the UK and Ireland charity working to improve the lives of people with Addison’s disease, adrenal insufficiency and all who support them.

Addison’s is a rare endocrine condition where the adrenal glands do not produce enough steroid hormones and can be life threatening. It affects approximately 1 in 10,000 people, meaning an estimated 300 - 350 new cases are diagnosed each year across the UK, this makes it roughly 300 times rarer than diabetes.

Life-long treatment with replacement steroid hormones is required. Medication is usually taken several times daily at carefully timed intervals and individuals must also know how to administer an emergency hydrocortisone injection to prevent a potentially fatal adrenal crisis.

At the ADSHG, we are here to support the Addison’s and adrenal insufficiency community and their healthcare providers to promote better medical understanding of this rare condition, campaign for and support everyone affected by adrenal failure, and fund vital research.

Founded in 1984 by Deana Kenward shortly after her own diagnosis, the ADSHG now works in co-operation with some of the UK’s leading adrenal specialists to promote broader medical understanding and effective management of this rare condition.

We work to provide practical support to people affected by Addison's and adrenal insufficiency in a number of ways:

advice and information for patients and their families
emergency medical advice for patients
information for healthcare professionals caring for people with Addison's
lobbying the NHS, HSE, policy-makers and influencers to consider the needs of people with Addison's
medical research

We are a Charitable Incorporated Organisation (non-profit) registered with the Charity Commission. We are governed by a team of volunteer trustees and run day-to-day by our executive team.

Want to know more? Please Contact Us

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!

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Latest

Jennifer's fundraising for Addison's disease

I'm raising money for the Addison's Disease Self Help Group so that they can continue to support people with Addison's and adrenal insufficiency. Addison’s is a rare endocrine condition where the adrenal glands do not produce enough steroid hormones and can be life threatening. It affects approximately 1 in 10,000 people, meaning an estimated 300 - 350 new cases are diagnosed each year across the UK, this makes it roughly 300 times rarer than diabetes.
Behind the Research: U-RHYTHM

Dr Thomas Upton updates us on the development of U-RHYTHM, a wearable device to measure hormones, including cortisol levels, in the body over the full 24 hours, following the release of their clinical trial study,
Behind the Research: The PULSES trial - Pulsatile Cortisol Infusion Pump

Dr Georgina Russell updates us on The PULSES trial, looking at the effect of pulsatile cortisol pump therapy on quality of life, mood, sleep, behavioural and cognitive processing and metabolism.
Getting the Flu Jab

Say No to Flu! Book your flu jab today. There is no need to miss out, as it is free to people who are steroid-dependent (everyone with Addison's disease and adrenal insufficiency). Dr Prete, Consultant Endocrinologist, explains more about the importance of getting your flu jab when you are steroid-dependent.

Sick Day Rules

Minor ailments can affect anyone with a steroid-dependent adrenal condition very differently. Things like vomiting, diarrhoea, colds and flu could cause an adrenal crisis. It’s important that you spot the early symptoms of a bug or cold and adjust your steroid replacement medication.
What is Addison's Disease?

Find out more about Addison's disease and adrenal insufficiency and and how they are treated.
Adrenal Crisis Can Kill
The Emergency Injection for the treatment of Adrenal Crisis

Understanding what an Emergency Injection kit is, how to inject and how important it is to use the injection during an Adrenal Crisis.
Coronavirus Vaccines and Adrenal Insufficiency

Everyone with a steroid-dependent adrenal condition should get the coronavirus vaccine and boosters to reduce their risk of getting coronavirus. This is because people who are steroid-dependent are at increased risk of needing hospital care if they get coronavirus, due to the risk of adrenal crisis.
Why Salt?

Why do people with Addison’s and adrenal insufficiency crave salty, acidic and sour foods at diagnosis, and then salt remains our “pick me up” when diagnosed? Professor Simon Pearce explains the connection between aldosterone, fludrocortisone and why you should always listen to your salt cravings.
Novel Coronavirus (COVID-19) - 02/10/2023

Our medics have been keeping an eye on pandemic developments. This page is up to date but we will continue updating it regularly as we find out more information from the government.
Updated NHS Steroid Card Released

Following the early release of the new NHS Steroid Emergency Card back in March to keep patients with Addison's or adrenal insufficiency safe during the COVID-19 crisis, the NHS steroid card has been updated and physical copies will be available to order from Tuesday 18th August 2020 for hospital teams!
Addison's & Adrenal Insufficiency: Advice for Dentists

The ADSHG guidelines offer illustrative guidance for major and minor dental procedures. It is important to recognise the physical stress of any invasive dental procedure and to ensure that adequate glucocorticoid cover is provided for steroid-dependent patients.
Surgical Guidelines

The ADSHG surgical guidelines are intended for the information of your medical team or your dentist and have been developed by our Clinical Advisory Panel.

Research Grants

Our charity is at the forefront of medical research into Addison's Disease. Help us fund medical researchers working in this important field of endocrine research. Read more