Search2024 – year in review
- 31 August, 2026
- EDS UK news
As we come to the end
of another year we’re reflecting on the last 12 months whilst looking forward to the new year. In a lot of ways 2024 was a landmark year for EDS UK with many significant changes in how we deliver support to the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) community. 2024 s
aw us create our new vision and mission for people living with EDS and HSD in the UK. We also created the first ever Theory of Change for EDS and HSD. This is our map of what needs to change for people living with EDS and HSD in the UK. It’s a useful document for funders to understand what we are working to achieve.
Our vision is that ‘Across the UK, people with EDS or HSD will be connected, heard, supported and have equitable access to care.’ Our mission is that we are the voice of the EDS and HSD community in the UK.
Throughout 2024 we worked under the following three areas:
Advocacy and Access
We spoke in the Scottish parliament and brought healthcare professionals and members together to call for action from MSPs. We worked with the Community Healthcare Pathways team in Wales to create the first ever pathway of care for EDS, HSD and hypermobility in primary care. Our volunteers in Wales and Scotland held exhibitions in the Senedd and Holyrood to talk to MS’s and MSPs about EDS and HSD. We spoke to MLA’s and delivered a petition to Stormont in Northern Ireland and we held a Westminster Hall debate in England.
Community and Connections
We continued to deliver support groups across 
the UK and connect people with other people going through the same EDS and HSD journeys. We developed a new ‘All About Me’tool with our volunteers to help support conversations with healthcare professionals during appointments. We introduced new long service awards for our volunteers and we introduced lifetime membership in response to feedback from our members.
Information and Knowledge
We delivered a number of webinars on subjects such as pain management and pacing and we also delivered training to PIP assessors. Our Adviceline supported hundreds of people over the phone and via email. We gathered content from young people in preparation for a new young person’s website. We revamped our membership model for our Fragile Links print and digital magazine. We also delivered the first ever GP conference on EDS and HSD in London, training GPs in how to diagnose and manage EDS and HSD.
To deliver all of this we have the most amazing team of volunteers, trustees and staff. There were a few changes throughout the year with Sarah Hamilton and Guy Hodgson leaving the staff team, and changes on the board with our Chair, Stephen Stacey stepping down at the end of their term alongside Adrian Steel, Leah Mansfield and Jason Pearce. We also welcomed new trustees, Yanina Aubrey, Tim De Winter, Jill Harrison, Helen Ball and Kathryn Caldwell, and thank all for their dedication and service to EDS UK
We became a fully flexible digital organisation and left our offices at the start of the summer. We reached our Dazzle Walk fundraising goal with the help of our incredible fundraisers, had an amazing May awareness month, and launched a brand new inclusive fundraising campaign this October called 13 for 13! We also exceeded our Trusts fundraising target, and sold postbox piglet-zebras!
Phew! It’s been an incredible year with so much momentum achieved through the efforts of so many. Thank you to everyone who has enabled all of this to happen. As we end the year this quote sums up the reason we are here. “Attending the first dazzle walk in Northern Ireland was the first time I was able to meet anyone with EDS and this will forever be a
very special and memorable moment in my life to which I am very grateful for.”
The Ehlers-Danlos Support UK are here to support anyone affected by EDS or HSD. We’re really looking forward to doing more of this in 2025 – are you?