SearchExpanding our community support in Northern Ireland
- 15 March, 2022
- EDS UK news
We’re very pleased to have been awarded £9,850 by the National Lottery Awards for All Northern Ireland. This new funding will help us to build on the fantastic work already being done by our volunteer Caitriona in Belfast. Our support group meetings and closed Facebook groups reached 130 people in Northern Ireland in 2021 but we know there is a need for more.
Northern Ireland has the worst NHS waiting list times in the UK, with 184,000 people waiting more than a year for their first outpatient appointment, according to figures released in June 2021. This means people with signs and symptoms of an Ehlers-Danlos syndrome (EDS) or a hypermobility spectrum disorder (HSD) wait more than a year before having any chance of finding out the cause of their pain and other often debilitating symptoms.
The new funding from the National Lottery Awards for All Northern Ireland will be used to recruit and train more volunteers in Northern Ireland and to pilot both in-person and virtual support groups in new locations and to promote these more widely. This one year pilot will enable us to learn more from people with EDS and HSD in Northern Ireland about the types of support that work best for them. We plan to further develop our relationship with the Northern Ireland Rare Disease Partnership and other voluntary and statutory organisations in the country to improve access to information and services for people with EDS and HSD.
We’d like to say a big thank you to players of the National Lottery and National Lottery Awards for All Northern Ireland for helping us to expand our work in Northern Ireland. We look forward to sharing more about our plans soon!