Calling families and young people with adrenal insufficiency! Please consider completing this survey to help develop national education standards and resources for sick day and emergency management with BSPED. Read more
NICE has published its first-ever national guidance for the identification and management of adrenal insufficiency. Read more
A new Consultation Reference Guide to support endocrinologists & nurses in their review of people with Addison’s disease, during diagnosis as well as follow-up appointments, is now available on the Society for Endocrinology & ADSHG websites. Read more
The previously branded ‘Solu Cortef’ hydrocortisone injection will now be known as ‘Hydrocortisone 100mg Powder for Solution for Injection or Infusion’ as it changes to the generic version. Read more
Introducing Rareminds new Wellbeing Hub and Podcast - vital resources designed to help individuals navigate some of the emotional challenges shared across rare conditions. Read more
Happy Addison’s Disease Day! Read on to find out how you can raise awareness and celebrate the incredible Addison’s disease and adrenal insufficiency community. Read more
Hear about our Patient's Voice session at the European Society of Endocrinology Conference, ECE 2024, the largest endocrine event in Europe. Read more
The Society for Endocrinology invited the ADSHG to their annual Clinical and Endocrine Nurse Update, to help raise awareness of adrenal insufficiency amongst endocrine teams. Read more
From 1 September 2023, the eligibility criteria for the free NHS shingles vaccine will expand. So what is the impact of shingles on people living with Addison's and adrenal insufficiency? We speak with Prof John Wass to explain more. Read more
Hydrocortisone Sodium Phosphate for emergency injection kits is once again available on prescription having been unavailable due to supply issues. Read on for guidance on requesting a prescription from your GP and support for learning the emergency injection. 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
Development of a prototype sensor to detect cortisol levels is underway. We let you know how you can contribute to the next stage of this research and hear from the Bionics+ team on their project known as a closed loop platform for endocrine system management. Read more
Do you have adrenal insufficiency & have experienced an adrenal crisis in the past 3 years? You're invited to take part in this research led by Aldons Chua, to improve adrenal insufficiency & adrenal crisis management. Read more
Working with the Royal College of General Practitioners (RCGP), we've launched a GP education module titled “Adrenal insufficiency with a focus on Addison's disease” providing a free eLearning module for GPs across the UK. Read more
We’re pleased to announce that the ADSHG is partnering with The Wren Project to help those of you who are finding it hard coming to terms with a new diagnosis or handling the emotions that come along with other difficult stages in managing adrenal insufficiency. Read more
Do you have adrenal insufficiency? Please consider completing this survey as part of the next stage of research led by Dr Sofia Llahana looking at what helps you better manage your condition and treatment, as well as the barriers. Read more
Working with NHS Digital, the ADSHG has updated the NHS content regarding Addison’s disease on the NHS website. The new guidelines incorporate extensive input from ADSHG steered by the Chair of the ADSHG’s Clinical Advisory Panel, Professor John Wass. Read more
Can you take part? Researchers are at the beginning of a project to develop a prototype sensor that can be worn on the skin to detect the levels of the hormone cortisol. Read more
New doses of Hydrocortisone instant release tablets, including lower strengths 2.5mg and 5mg, have been released. This removes the step of breaking tablets, giving people with Addison's and adrenal insufficiency a single tablet with the dose they require. Read more
Do you have Addison’s or adrenal insufficiency? Please consider completing this survey to aid the development of SOLUtion Medical’s one-step injector for delivering adrenal crisis medication. 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
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
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
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
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
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
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