About us What we do ADSHG Members in Ireland Membership The Addison's Disease Self-Help Group charity is based in the UK, but has always, and continues to welcome e-members from all over the world to foster a community where we can learn from each other and pool our knowledge and experience. We have a wonderful, engaged and passionate group of members in the Republic of Ireland, who we have always referred to as 'Addison's Ireland'. This section of our website captures information relevant to this valued group of members. Ireland Charity Update - Addison’s and Adrenal Support Ireland charity The Addison's Roadshow: Newry Addison's Forum HSE Living Well Programme No matter where our members are based, as a charity, we are all working with the same value set and towards the same goals: supporting people with Addison's disease and adrenal insufficiency, connecting with each other, and the medical endocrine community, raising awareness of this rare disease and its affect, and driving forwards to seek improvements in treatment and research that can change the quality of life of those with Addison's or adrenal insufficiency for the better. We enjoy great relationships with both members in the Republic of Ireland (RoI), and with medics and health professionals alike. Whilst there are obvious differences between the UK and the RoI health service, many of the principles of the work we do are as applicable in Ireland as they are in the UK. Join us as an e-member Ireland Charity Update As a result of Brexit in 2020 there have been some legislative and regulatory changes that dictate how charities based in the UK must act as regards their operations in the Republic of Ireland. We have been fortunate to have enjoyed wonderful meetings in the past in the RoI, but in 2024, we were required to take legal advice and unfortunately were advised to formally withdraw our operations from the Republic of Ireland. The Pituitary Foundation UK is similarly affected. Addison’s & Adrenal Support Ireland CLG Board – Clockwise from Top: Rachel Bracken (Chair), Rosemarie Kennan (Secretary) & Patricia Hinch (Treasurer). Trustee Robert, who lives in Ireland himself and Rachel Bracken, our longstanding Ireland co-ordinator volunteer, updates as below: The ADSHG have been assisting Addison’s and Adrenal Support Ireland with setting up their new charity by means of a grant and administrative support from ADSHG staff. These things do take time to work out however and then to implement, so as Robert and Rachel say, please get in touch if you could support. The Addison's Roadshow: Newry We were delighted to host an Addison's Roadshow event in Newry in 2024. The event was a huge success, bringing together those with Addison's and adrenal insufficiency to enjoy an interactive session about managing Addison's disease in an emergency, hearing about the last 12 months for the charity, and most importantly, getting a chance to voice their questions and thoughts on what the next 12 months might bring. This was even more important in light of the change in regulations, so we could understand your opinions and concerns. Read the Newry Round-Up Addison's Forum Our member online forum is a confidential forum allowing members to communicate with each other, share information and experiences, and get answers to questions relating to Addison’s disease and adrenal insufficiency. We have included a specific forum topic area dedicated to Addison's Ireland, for discussion of any specific issues regarding the Irish health system. Visit the Addison's Forum area relating to Ireland Research There are many exciting things in the pipeline! We have deployed the Shane Nicholl fund to Professor Mark Sherlock of Beaumont Hospital, for his research in developing an adrenal database on the island of Ireland. Shane Nicholl was a 10-year old boy from Warrenpoint Co. Down who died tragically in 2016 from undiagnosed Adrenal Crisis. Prof Sherlock of the Beaumont Endocrine Foundation, discussing adrenal insufficiency research in Ireland We would love to see Adrenal Insufficiency being listed on the long-term illness scheme to have medications paid for. The ADSHG have previously raised parliamentary question to this effect but didn't have the hard data on the number of people affected. This research and the adrenal database made possible by the Shane Nicholl fund will help us with this and many other future initiatives. Whilst the impact of COVID-19 delayed efforts into this research due to the team being redeployed to respond to the pandemic, critical progress has been made. The charity remains committed to investing into Addison's disease and endocrine research. We will continue to provide updates in our regular magazine and emails. To find out more about ADSHG's other research work and grants awarded, please visit our research page. HSE Living Well Programme Living Well is a free group self-management programme. As living with a long-term health condition can be challenging, the Living Well programme supports you to develop the skills which will help you to live well with a long-term health condition(s). The Living Well programme has proven to be effective in helping people to manage their health conditions better. Visit the HSE Living Well website to find out more. 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! Join the ADSHG Connect on social media! Follow us on X/Twitter, Bluesky, Facebook, Instagram, LinkedIn, Threads, TikTok and YouTube. Manage Cookie Preferences