Latest news and stories

40 years of the Addison's Disease Self-Help Group

o mark its 40th anniversary, the Addison's Disease Self-Help Group took its Addison's Roadshow across the UK, bringing together members, healthcare professionals and volunteers in Glasgow, London, Cardiff and Newry. Each event offered a unique opportunity to learn from leading endocrine experts, receive emergency injection training, hear the latest research developments and connect with others living with Addison's disease and adrenal insufficiency. 

15 October 2024

Rachel's Story: The Friendly Doctor

In this personal story, Rachel reflects on her journey from diagnosis to qualification as a doctor, the lessons she has learned as both a patient and healthcare professional, and her hopes for the future as she begins treatment with a cortisol infusion pump. Her story is a powerful reminder that having Addison's disease does not define what you can achieve.

7 October 2024

Ambulance Care: Moving Away from Red Flagging

Following a review by the Association of Ambulance Chief Executives (AACE), ambulance services are moving away from using ‘Red Flags’ for people with steroid dependency. This update explains what the change means, how Summary Care Records can support emergency care, and the practical steps you can take to stay safe during an adrenal crisis.

11 September 2024

NICE Releases New Guidance for Adrenal Insufficiency

The National Institute for Health and Care Excellence (NICE) has published its first national guidance for the identification and management of adrenal insufficiency. The new recommendations aim to improve patient safety, strengthen adrenal crisis prevention, and ensure better access to emergency injection kits, steroid emergency cards and appropriate treatment.

27 August 2024

Robert & Mark's Fundraising Challenge: Verona to Venice Cycle

Robert McClements, an ADSHG Trustee, and his long-time friend Mark Richardson took on an ambitious 450km cycling challenge from Verona to Venice to raise funds and awareness for people living with Addison's disease and adrenal insufficiency. Inspired by Robert's daughter Victoria's experience with Addison's disease, the challenge supported the ADSHG's work in patient support, advocacy and research.

22 July 2024

Ingrid's Story: Exercising with Addison's

After being diagnosed with Addison's disease following adrenal surgery, Ingrid shares how exercise, careful condition management and emergency preparedness have helped her stay active, healthy and confident into her 80s. 

27 April 2024

Behind the Research: Louise Breen

What difference do steroid emergency cards and perioperative guidelines make in real-world clinical care? Researcher Louise Breen shares findings that could help improve safety and outcomes for people living with adrenal insufficiency

26 March 2024

Behind the Research: U-RHYTHM System (Portable Hormone Collection Device)

Could the future of Addison's disease treatment be more personalised? Dr Thomas Upton shares the latest developments in the U-RHYTHM system, a groundbreaking wearable device designed to monitor indivdual hormone levels continuously over 24 hours.

28 November 2023

Behind the Research: PULSES Trial (Pulsatile Cortisol Infusion Pumps)

For many people living with Addison's disease and adrenal insufficiency, standard cortisol replacement therapy does not fully replicate the body's natural hormone patterns. The PULSES trial set out to explore whether pulsatile cortisol pump therapy could bridge that gap. In this interview, Consultant Endocrinologist Dr Georgina Russell discusses the research journey, key findings and what this innovative treatment could mean for future hormone replacement therapies.

13 November 2023

Hannah's Story: Medical ID Tatoo

Hannah shares her experience of being diagnosed with Addison's disease, relocating to Gibraltar with the Royal Navy, and learning how to manage adrenal insufficiency while living abroad. Her story also explores raising awareness through an Addison's medic-alert tattoo and building confidence in living with a rare condition.

2 October 2023