New standalone guidelines regarding steroid-dependent patients have been issued by JRCALC for paramedic use. We explain how ADSHG worked with the team to make this vital addition, improving patient safety. Read more
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. Read more
Do you have primary adrenal insufficiency - such as Addison’s disease or CAH? Please consider taking part in this research study looking at management of adrenal crisis, led by Lisa Shepherd, Endocrinology Advanced Nurse Practitioner/HEE/NIHR Clinical Doctoral Research Fellow at University Hospitals Birmingham NHS Foundation Trust and ADSHG Medical Trustee. Read more
We are delighted that our article "Think Addison's disease - save a life", is featured in today's Guardian newspaper Rare Diseases supplement! Read more
Advanz Pharma, the supplier of hydrocortisone sodium phosphate, has confirmed that due to manufacturing issues, they are currently unable to supply the liquid hydrocortisone and expect to resume supply by Q1 2023. Read more
Earlier this week members of the Addison’s community were dismayed to learn of the passing of Katherine White the indefatigable chair of the Addison's Disease Self Help Group for many years. Read more
Do you have Addison’s or adrenal insufficiency? Please consider completing this new research questionnaire looking at post-traumatic growth (PTG), led by Rachel Berryman, final year BSc Psychology student at the University of Hull. Read more
Sign this petition to help prevent the unethical practice of price gouging. We speak with Professor Karim Meeran, Endocrinologist at Imperial College London to learn more about this vital petition. Read more
Please consider completing this new research questionnaire, looking to better understand how children, young people and their carers use the different hydrocortisone formulations available, how they prepare doses, and how using these formulations and methods affect their everyday lives. Read more
Do you have adrenal insufficiency? Please consider taking part in this research study led by Dr Sofia Llahana looking at what helps you better manage your condition and treatment, as well as the barriers. Read more
Healthcare professionals in the UK refer to the JCVI's 'Green Book' when adding patients into priority groups for vaccinations. In the July 2021 update to the dedicated chapter on Covid-19, Addison's Disease has been added to a risk group that should receive COVID-19 immunisation. Read more
ADSHG join National Voices and 56 healthcare charities in a joint letter to the Prime Minister, regarding the next phase of the COVID response, and the need to urgently address the needs of people who remain at high risk from the virus. Read more
This Addison's Disease Day, publishers Springer are generously giving you exclusive access to the 'Advanced Practice in Endocrinology Nursing' and two of their chapters on adrenal insufficiency, by Sofia Llahana, Irene Mitchelhill, Phillip Yeoh and Marcus Quinkler. Read more
Do you have Addison’s or adrenal insufficiency? Please consider completing this new research questionnaire looking at motion sickness, led by Abigail Lee at the University of Leicester. Read more
Addison’s Disease Self-Help Group (ADSHG) are delighted to announce their sponsorship of 3 CoMICs team members to the European Society of Endocrinology (ESE) Conference in 2022. Read more
Every year, ADSHG funds exceptional research. After many impressive submissions, we are delighted to announce the 2020 Research Grant winners. Read more
ADSHG are delighted to be featured in Rare Disease 101 - an educational module for medics to improve rare disease patient care. Read on to find out more about M4RD's amazing new platform. Read more
On 9 January 2021, the Department of Health and Social Care published the UK Rare Diseases Framework. But what does this policy mean for those with Addison’s disease, adrenal insufficiency and the rare disease community as a whole? Read more
A deal has just been announced regarding the European Union. it's worth being prepared for the possible outcomes when you have Addison's or Adrenal Insufficiency. Read more
In recent days, UK news networks have been sharing a story about new studies hailing Hydrocortisone as a Covid-19 treatment. We asked our medics to review the research and the emerging stories so that we can give you a balanced perspective while also updating you on any impacts to the drug supplies we depend on. Read more
Complete the Adrenal Causes Together (ACT) survey to help determine the impact of COVID-19 on people with all forms of adrenal insufficiency from around the world. Read more
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! Read more
Press Release:: Addison's Disease and Adrenal Insufficiency: At least 1785 people in UK unable to self-manage COVID-19 to reduce the burden on the NHS Read more
International Addison's Day 2020, our second international day of recognition focuses on 'Being Prepared'. We're asking everyone around the world who supports people with, or who have adrenal insufficiency of any type to join us in a day of raising awareness. Read more
the European Journal of Endocrinology (EJE) editoral board has commissioned a new guidance series for the management of endocrine conditions during COVID-19. Included within this is clinical guidance for the management of Addison's disease and adrenal insufficiency. Here we take a look at this vital new guidance, so you can get a clearer view of what this means for you or your loved ones. Read more
We need gather data urgently about how well prepared our Addison's and Adrenal insufficiency communities are for illness or emergencies. Complete our very short survey today and be assured we will represent you. Read more
In our latest video, ADSHG Trustee and Professor of Endocrinology explains how to manage your medication should you get ill in the coming weeks. Read more
We're marking Women In Science day by highlighting our latest ADSHG Research Awards for 2020, and celebrating the work of one of our previous recipients Nurse Helen Loo and her work into Cortisol Alert Dogs. Read more
We’re delighted to announce "Living with Addison's Disease – A Guide For People With Addison's, Supporters and Professionals", has been commended by the 2019 BMA Patient Information Awards. Read more
We launched our new website, addisonsdisease.org.uk earlier this year. Since then you’ve been sharing your thoughts and ideas about how we can improve it. Read more
Our aim with this project was to reach as many paramedics and ambulance crews as possible, all over the country, with a seminar focusing on adrenal crisis and emergency management of Addison’s. Read more
Our ground-breaking, best-selling book marries evidence-based clinical best practice with the practical day-to-day hints & tips for living well with Addison's Disease. Winner of "Commended" at the 2019 British Medical Association (BMA) Patient Information Awards - the book is available from Amazon so it can be delivered worldwide! Read more
As part of our drive to raise awareness of Addison’s Disease, we’ve started a project which will culminate with an exhibition and book - Facing Addison’s. Our collaborator is award-winning photographer Lucy Sewill, best known for her perceptive portraits of major British celebrities. Read more
Over recent weeks, people have become increasingly alarmed about media stories of Brexit-related shortages of medicines. Read more
The Society for Endocrinology invited the Addison's Disease Self-Help Group to their annual meeting Glasgow on 19th-21st November 2018 to help raise awareness of adrenal insufficiency amongst clinicians. Read more
Our aim in attending was to raise awareness of Addison's Disease amongst the medical fraternity and to participate in related symposium discussions. Read more
The updated JRCALC 2017 Clinical Practice Guidelines incorporate new ambulance guidelines on adrenal crisis, following input from the ADSHG and The Pituitary Foundation, steered by the Chair of the ADSHG’s clinical advisory panel, Prof John Wass. Read more