Our Strategy and Impact

• Provide high-quality information, guidance and support for people living with Addison's disease and adrenal insufficiency at every stage of their journey.
• Facilitate peer support and community connections between patients, families and carers.
• Reach and support as many people with adrenal insufficiency as possible across the UK.
• Deliver accessible events, publications, online resources and support services. 
• Improve the charity's digital presence, website usability and member engagement.

• Strengthen relationships between patients and healthcare professionals. 
• Improve healthcare professionals' awareness and understanding of adrenal insufficiency and Addison's disease.
• Collaborate with national and international organisations working in rare diseases and endocrinology. 
• Continue influencing NHS, NICE and professional bodies to improve care and outcomes

• Help patients progress from diagnosis to becoming informed and confident "expert patients". 
• Advance knowledge of adrenal insufficiency amongst healthcare professionals.
• Improve understanding, prevention and management of adrenal crisis. 
• Support targeted research, patient insight surveys and selective seed-funding initiatives.

• In line with our updated charitable objectives, broaden support from a primary Addison's disease focus to include people with secondary and tertiary adrenal insufficiency. 
• Grow the charity's influence with healthcare professionals, policymakers and other key stakeholders. 
• Be recognised as the leading UK charity and patient support group for adrenal insufficiency. 
• Maintain high standards of clinical accuracy, governance, transparency and professionalism. 
• Develop the staff team, strengthen volunteer capacity and improve organisational resilience.

• Advocate for people with Addison's disease and all forms of adrenal insufficiency by increasing the charity's influence with healthcare professionals, policymakers and organisations with a duty of care. 
• Influence NICE, the NHS and DHSC to improve outcomes for patients. 
• Improve awareness and education among GPs, primary care staff, paramedics and emergency medicine professionals to reduce avoidable harm and deaths from adrenal crisis. 
• Explore parliamentary engagement, including working with MPs and potentially establishing an APPG focused on preventing deaths due to adrenal insufficiency and adrenal crisis. 
• With consent/anonymous data, use patient experience data, surveys and research findings to influence policy, healthcare practice and wider understanding of AD/AI.
• Work collaboratively with professional societies and international organisations to advocate for improvements in care, treatment and awareness.

• Ensure membership, regular giving and core income cover operational costs. 
• Grow membership and supporter numbers year on year. 
  Increase income from trusts, foundations and recurring donations. 
• Invest strategically in people, technology and infrastructure to support long-term growth.
• Maintain sufficient reserves and financial stability while accepting appropriate levels of risk to achieve impact. 

Embracing the practicality and cost efficiency of running an AGM online, we combined the annual business of the charity with a much-valued Q&A with ADSHG trustees, Dr Alessandro Prete and specialist endocrine nurse Lisa Shepherd. 

A virtual event meant a wider sign up from 88 members all over the UK, from the comfort of their homes, without travel costs or inconvenience.   

It was a challenge to distil our recent achievements and future plans into a short presentation, but we certainly covered what we could, before you formally voted in trustee Tom Barnes and re-elected trustees Dominic Hargreaves, Dr Alessandro Prete and Lisa Shepherd.  

Importantly, you agreed an update to the wording of our charity’s constitution (below) to reflect the fact that we increasingly support people with all three types of adrenal insufficiency.  

The objects of the CIO are to promote the relief of persons with Addison's disease and other forms of adrenal insufficiency, in particular by the provision of support, information and communication for such persons, their families and carers and by such charitable means as the trustees determine​” 

A grateful thank you to Alessandro & Lisa for running the Q&A, and to everyone who attended the AGM, for your support and your engagement. 

A recording of the AGM is available for members to watch on the online community platform.

2024 was the 40-year anniversary of the charity and the perfect excuse for a roadshow of events in Glasgow, London, Cardiff and Newry.   

Our London event included our AGM, and we were thrilled to see so many people join us on the day.

Expert Speakers

• Clinical Advisory Panel Chair, Professor John Wass, presents on: "Adrenal Insufficiency: Past and Present”
• Aldons Chua RN (Endocrine Nurse Specialist) leads one of our emergency hydrocortisone training sessions
• Julia Anthony MS (SOLUtion Medical) presents: “Research update - one-step injector for adrenal crisis, TwistJECT™"
• Dr Alessandro Prete: “Adrenal Insufficiency: Looking to the Future”
• Medical Q&A panel session answers your questions. Our thanks to Professor John Wass, Dr Alessandro Prete, Lisa Shepherd RN, Dr Sofia Llahana and ADSHG Chair Dom Hargreaves

Connecting with our community

ADSHG member Lisa shared her thoughts on the day:

I can't tell you how worthwhile, well planned, informative and emotional I found the day. I learned so much and felt privileged, after many years of not knowing anyone else with Addison's, to not only meet with so many who share the same condition as myself but to also be able to ask experts in this field questions. Alongside of this, I felt humbled to meet some of the many people who give their precious time for the benefit of educating and advancing things for us members.

I learned so much and felt privileged, after many years of not knowing anyone else with Addison's, to not only meet with so many who share the same condition as myself, but to be able to ask experts in the field questions.

On the day I was wearing a dress in the Addison's colours...purley a wonderful conincidence but perhaps somewhere in my subconscious I picked it out!

Videos from the day are available to watch on our member-only online community platform:

 View AGM 2024 video