SearchNews and events
15 June, 2026
Government responses show why EDS and HSD pathways are urgently needed
New findings from the hEDS-START project, led by Kathryn Berg and Dervil Dockrell at the University of Edinburgh, have confirmed what people living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) have told us for many years: diagnosis takes too long, care is too fragmented, and too many people are left to find answers […]
9 June, 2026
Building on Nearly 40 Years of Advocacy: Delivering Systemic Change Across the UK
2026 has already been a landmark year for EDS UK’s public affairs and policy work. In March, our community came together to support the Westminster Hall debate on Ehlers-Danlos syndromes (EDS) and craniocervical instability (CCI), helping to ensure that Parliament heard directly about the challenges faced by people living with these conditions. Supporters sent an […]
5 June, 2026
Help Us Double Our Impact This June
From 22nd – 29th June 2026, EDS UK will be taking part in the Small Charity Week campaign – and we need your help to reach our £20,000 fundraising target. For one week only, thanks to the wonderful Postcode Lottery players, donations made during the campaign window will be DOUBLED through funding awarded by Postcode […]
4 June, 2026
From a UK GP resource to a global clinical education platform.
We’re delighted to share that the EDS UK GP Toolkit has been adapted into a new Medscape Guideline Summary on Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorder (HSD). Developed to support primary care professionals in recognising, diagnosing and managing EDS and HSD, the EDS UK GP Toolkit has become a trusted educational resource across the […]
14 April, 2026
From lived experience to Westminster: making every voice matter
Through more than 3,500 e-actions reaching 98% of all MPs, our community ensured that people living with Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD) and associated conditions could no longer be ignored. Our collective effort as a community, and collaboration as one of the founder members of the Overlapping Illness Alliance, led directly into parliamentary […]
9 April, 2026
Over 2,000 voices. One clear message: people with hEDS & HSD are being let down. Let’s Make May Matter.
We are thrilled to announce that the hEDS START research has been published in the Disability and Rehabilitation journal. This important study helps to build the evidence base around these often misunderstood conditions. Kathryn Berg and Dervil Dockrell undertook the study at the University of Edinburgh, exploring the lived experience of individuals with hypermobile Ehlers-Danlos […]
1 April, 2026
In loving memory of Professor Rodney Grahame CBE 1932-2026
Professor Rodney Grahame CBEA pioneer, clinician, and champion for the hypermobility community We are saddened to hear of the passing of Professor Rodney Grahame, a world-renowned expert in the Ehlers-Danlos syndromes and hypermobility-related disorders, and a long-standing member of the EDS UK Medical Advisory Panel. Professor Grahame played an important role in improving understanding of […]
18 March, 2026
Make it Matter: Westminster Debate on EDS, HSD and CCI
On Thursday 26 March, MPs led by Josh Newbury MP, will gather in Westminster Hall to debate outcomes for people with Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD) and craniocervical instability (CCI). This is a crucial opportunity to ensure that the voices of our community are heard in Parliament — and we need your help to […]
27 November, 2025
Overlapping Illness Alliance parliamentary drop-in update
Over 50 MPs, Peers, and their colleagues attended the Overlapping Illness Alliance’s drop-in event in Parliament on Tuesday! The event raised much needed awareness and understanding of the impact of the illnesses represented by the Alliance’s founding members. It provided an opportunity to engage with parliamentarians, highlighting the many overlaps that exist, including the effects […]
13 November, 2025
Invite your MP to come and meet EDS UK and healthcare experts on the 8th December
EDS UK is holding an MP drop in session on Monday, 8th December between 2:15pm and 3:45pm in Portcullis House. We need you to write to your MPs again please and ask them to pop into the drop in and talk to us about how they can help. Last week we asked you to write […]
13 November, 2025
Invite your MP to come and meet EDS UK and healthcare experts on the 8th December
EDS UK is holding an MP drop in session on Monday, 8th December between 2:15pm and 3:45pm in Portcullis House. We need you to write to your MPs again please and ask them to pop into the drop in and talk to us about how they can help. Last week we asked you to write […]
5 August, 2025
The National Lottery have given a grant for our support groups in Scotland!
We are delighted to announce that we have received a grant from The National Lottery to help develop our support groups in Scotland. We have received funding for two years to help us recruit, induct and support our volunteers in Scotland and grow the number of people we can support. We also have a small […]
31 July, 2025
Important Enough is Enough campaign update
Our Chief Executive Susan Booth has announced an important Enough is Enough campaign update. I was delighted to meet with Josh Newbury MP and his team in Westminster a couple of weeks ago. We discussed The Ehlers-Danlos Support UK’s #EnoughIsEnough campaign (which gained over 33,000 signatures across the UK) and reflected on the work we […]
29 May, 2025
Joint letter to the Director for Poverty, Housing and Disadvantage at the Department of Work and Pensions
We have collaborated with the HMSA and EDS Society to jointly write a letter to Mr James Wolfe, the Director of Poverty, Housing and Disadvantage at the Department of Work and Pensions regarding the ‘Pathways to Work’ consultation on benefits. We expressed our deep concern over the proposed changes and asked how the changes to […]
9 April, 2025
What is a green paper and what do we know about the proposed changes to benefits so far?
Following the publication of the ‘Pathways to work’ green paper many members have got in touch asking how the proposed changes are going to affect them. In this article EDS UK member Martin Roberts LLB (Hons) LLM, an advisor at Citizen’s Advice Bureau, has explained what a green paper is and gone through what we […]
8 April, 2025
Syringomyelia 2025 conference
Syringomyelia 2025 (Liverpool 2-4th July) The upcoming international conference on EDS, Syringomyelia, and Chiari malformations has a range of national and international speakers covering pathophysiology, surgical approaches, and symptom management. The Ehlers-Danlos Support UK is supporting the conference and presenting on the role of social media in patient support. This is the chance to hear and […]
4 April, 2025
Raising awareness of EDSHSD at the The Highway Authorities and Utilities Committee Convention
For the past few months, one of our members Alex Akitici has volunteered to lead the Community Pillar, creating the next 5 year vision for the The Highway Authorities and Utilities Committee (HAUC UK). As part of the Community Pillar Alex is ensuring that Accessibility and Inclusion are within this vision to ensure all street […]
3 April, 2025
Tackling Misinformation about Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders and Postural Tachycardia Syndrome
A shared statement from The Ehlers-Danlos Support UK, PoTS UK and The Hypermobility Syndromes Association (HMSA) We have recently reviewed the podcast and book from Dr Suzanne O’Sullivan about the culture of medical diagnosis. It has some concerning themes within it and a lack of understanding of complex chronic conditions like Ehlers Danlos Syndrome (EDS), […]
4 March, 2025
Exciting new research into exercise and vEDS announced.
We are delighted to announce that Annabelle’s Challenge and The Ehlers-Danlos Support UK are jointly funding a new research programme together with Sheffield Hallam University for the benefit of adults living with vascular Ehlers Danlos syndrome (vEDS). For the purposes of the programme, researchers will work alongside people with vEDS, carers and healthcare professionals to […]
31 January, 2025
EDS UK Trustee attends soft robotics seminar
Future tech could aid EDS mobility needs EDS UK Trustee Anne Lavery told a meeting of disability tech researchers about the practical needs of people living with Ehlers Danlos Syndrome. She was speaking as part of a lived experience panel at a seminar exploring the design and application of softrobotics for people with disabilities. The […]