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 welcomes 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. 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 Events and meetings in Ireland 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. It has taken everyone some time to work out exactly what these changes are and how they affect charities large and small. We have been fortunate to have enjoyed wonderful meetings in the past in the RoI but this year (2024) we have taken legal advice and unfortunately been advised that we are not currently able to have events in Ireland for the UK charity. Prof Sherlock of the Beaumont Endocrine Foundation, discussing adrenal insufficiency research in Ireland 2024 Roadshow Updates As you may know, we were hoping to have one of our 40th Anniversary Roadshow meetings in Dublin in August. We are very sad and disappointed to say that we have had to move this out of Dublin and it will now be taking place in Newry, just over the border. We chose Newry because it's so close to the border, is reasonably accessible by road, and is linked directly to Dublin by train. The cross-border Dublin-Belfast service stops there and there is a shuttle bus from the station to within a short walk to the venue. It will be a fantastic opportunity to get together with others in the Addison's and adrenal insufficiency community, 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 your questions and thoughts on what the next 12 months might bring. In light of the regulations, it is particularly important for us to understand your opinions and concerns so please come along. Join us in Newry Our intention is certainly to continue supporting the Addison's and adrenal insufficiency community in Ireland, so we are looking at the various options for ways to get ourselves regulated to deliver events in the republic again as soon as possible. These things do take time to work out though, and then to implement. Watch this space! 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. 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 Addison's Ireland publications The publication 'Caring for the Irish patient with Addison's: information for GPs', has been developed with information about the healthcare system specific for people with Addison's in Ireland. All the other publications from the ADSHG are also available to you and are available for free download in the publications centre. 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. 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 theimpact 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. We are absolutely brimming with ideas to improve the lives of those with Addison's, but we need your help. 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