SearchEDS UK news
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 […]
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 […]
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 […]
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 […]
9 January, 2025
Making Movement Accessible – FREE movement videos and workout sheets for EDS UK members
Thanks to a generous grant from Sport England we were able to offer members access to adapated movement classes throughout 2025. Run by coaches with lived experience of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD), these courses were adapted for safe movement for people with EDS or HSD. See below for the links to […]
15 October, 2024
Enough is Enough update – Scotland
Our petition calling for suitable NHS services for hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders was considered again by the Scotland Petitions Committee on the 9th October. At this meeting, the Committee agreed to write to the Scottish Government and NHS Wales. Michael Marra MSP spoke in support of the petition and Emma Roddick MSP […]
23 May, 2024
Andrew Selous holds hEDS and HSD debate in Westminster for EDS UK
We were delighted with the opportunity to represent the EDS UK community in Westminster yesterday, in a debate led by Andrew Selous MP. It was validating to hear so many powerful testimonies from MPs from their constituents, which echoed the stories we hear through our Adviceline and support groups, including Dean Russell MP who spoke […]
15 May, 2024
An NHS national pathway for hypermobility disorders in Wales
We are delighted to announce that The Ehlers-Danlos Support UK is working with NHS Wales to coproduce and implement a national pathway for hypermobility disorders in Wales. In May 2024 we launched our #EnoughIsEnough campaign, to highlight the neglect and harm caused by the lack of diagnosis and management services for hypermobile Ehlers-Danlos syndromes (hEDS) […]
7 May, 2024
EDS UK campaigning reaches Holyrood
Today we where in Scottish Parliament at Holyrood meeting MSPs and talking to them about the need for a pathway for people living with hypermobile EDS (hEDS) and hypermobility spectrum disorders (HSD). New research published today from the hEDS-Start study evidences the lived experience of hEDS and HSD in Scotland. It found that individuals with […]
15 February, 2024
A pain in the hypermobile…with Jeannie DiBon
Jeannie DiBon, a movement therapist specialising in hypermobility, Ehlers-Danlos syndrome, and chronic pain has hosted several webinars with us at EDS UK, sharing her wealth of knowledge. During the pandemic lockdown, it was very quickly apparent that members were unable to appropriately access their local services for symptom management as everything had shut down. With […]
14 December, 2023
Wales #EnoughIsEnough petition update
In September of 2023, EDS UK’s petition for Wales, campaigning for suitable NHS services for people in Wales with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) was discussed in the Senedd Cymru, Welsh Parliament. In a positive discussion, it was suggested by a member of Parliament, whose family members have EDS, that individual […]
27 November, 2023
A momentous day as EDS UK head to Downing Street
Tuesday 21 November 2023 was a momentous day for The Ehlers-Danlos Support UK. In the early afternoon we held a briefing with MP’s in Westminster on the lack of NHS services for people with hypermobile Ehlers-Danlos syndrome or hypermobility syndrome disorder in England, before handing in our #EnoughIsEnough England petition to number 10 Downing Street. At […]
3 November, 2023
Two new EDS UK Community Champions
In winter 2021, EDS UK launched its Community Champion Awards and we have been delighted to present nine Community Awards over the past two years on behalf of our members. We are delighted to announce two new award winners; Kathryn Berg, Trial Manager in the Centre for Genomics and Experimental Medicine at the Institute of Genetics […]
28 July, 2023
An update following the governments response to our England petition
In May 2023 we launched our #EnoughIsEnough campaign to call upon the governments in England, Scotland, Wales and Northern Ireland to fund or commission suitable NHS services for those with hEDS and HSD. A key part of the campaign is a petition in each part of the United Kingdom. On 5th July the government responded to […]
17 May, 2023
EDS UK launches UK wide petitions to provide dedicated funding for diagnosis/treatment of hypermobile EDS and HSD
We have just launched our #EnoughIsEnough campaign. A campaign to call upon the government through petitions and community engagement, to fund suitable NHS services for diagnosis and treatment of hypermobile EDS and HSD. An important part of this campaign is a separate petition for each part of the UK (England, Scotland, Wales and Northern Ireland). […]
16 May, 2023
EDS UK hold an awareness event in Scottish Parliament
Ehlers-Danlos Support UK held an awareness event in the Scottish Parliament on the 4th May. EDS UK’s Chair Stephen Stacey and Managing Director Kay Julier joined Scotland volunteers Anne, Michele and Jessica who were instrumental in organising the event. The event was sponsored by Marie McNair MSP and around 10 other Members of Scottish Parliament […]
18 April, 2023
Susan Booth joins The Ehlers-Danlos Support UK as CEO
The trustees of The Ehlers-Danlos Support UK are delighted to announce that Susan Booth, recently Executive Director, Development at Target Ovarian Cancer, has been appointed to succeed Kay Julier. Susan will take up the position from 1 July and work alongside Kay from mid-June. Stephen Stacey, chair of trustees, said: “When Kay told me that […]
22 February, 2023
Charity funding leads to 10 year study of rare EDS types
Research funded by EDS UK and Annabelle’s Challenge in 2019 has led to a new 10 year study of rare types of Ehlers-Danlos syndromes (EDS). The Natural history Exploration of rare EDS types (the NEEDS study) will be led by Dr Fleur van Dijk in collaboration with Dr Neeti Ghali from the National EDS Diagnostic Service […]
15 February, 2023
British neurosurgeons plan hypermobility working group
British and Irish neurosurgeons are holding a one day meeting at the end of March dedicated to hypermobility of the spine in connective tissue disorders. The session is part of the Society of British Neurological Surgeons’ (SBNS) spring meeting, to be held in Cork. We particularly welcome this event as progress on agreeing an approach to treating […]
28 October, 2022
Notification of Scheme from the Charity Commission
On 9th March we published a news article to inform supporters that we where working with the Charity Commission over our 12-24 appeal, which raised funds for diet and EDS research. The Fundraising Regulator had judged that our appeal should be treated as failed and donors had the right to have their donations returned or […]
6 October, 2022
Urgent appeal from EDS UK
In our post-pandemic world, amid a new cost-of-living crisis, the support we provide people with EDS and HSD is needed more than ever. The cost-of-living crisis will have an impact on everyone, but for those with a disability, the impact will be felt even harder. The Institute of Health Equity summarised it like this: “Living […]
13 July, 2022
EDS UK contributes to new rare disease report
Rare disease report ‘A Fairer Future: Towards a more equitable delivery of care for those with rare diseases and conditions‘ has been published, with contributions included from EDS UK. The report is the result of a series of workshops convened by independent global policy institute Public Policy Projects, with patient advocates and experts from clinical medicine, […]
22 April, 2022
EDS UK participates in PIP consultation
We were recently contacted by the stakeholder engagement team at Capita, an independent company working with the Department for Work and Pensions to carry out Personal Independence Payment (PIP) assessments across England and Wales. The team wanted to find out more about the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) and how they affect […]
1 April, 2022
2022 EDS UK Great British Bake-In winners
We are thrilled to announce the 2022 EDS UK Great British Bake-In winners! With well over 1,000 voted made, the top few contestants in both adults and juniors were only a few votes apart! The adult Star Baker for 2022 is….Natasha Natasha made a fabulous Eddy the Zebra cake for Zebra week with an amazing marbled […]
24 March, 2022
EDS UK Bake-In 22 Zebra Winners
Thank you all for taking part and voting opens tomorrow!. You will be able to vote from tomorrow on our dedicated EDS UK Bake-In website. Junior Winners: Congratulations to Jai and Isabelle who both go through to the final. Jai loves to make crispy cakes and these where exactly that! Delicious chocolate, coco pops with […]
16 March, 2022
EDS UK Bake-In 22 Bread Winners
Thank you all for taking part and good luck in the final challenge, Zebra!. Full details of the various challenge weeks and how to take part can be found here. Junior Winners: Congratulations to Olivia and Isabelle, who both go through to the final. Olivia really enjoyed making her hedgehog rolls and used scissors to […]
16 March, 2022
Ellie Taylor wins Celebrity Mastermind for EDS UK
Last month our Patron, Ellie Taylor, was quizzed in the famous black chair on her specialist subject, Geri Halliwell. We are delighted to say that not only did she raise awareness of EDS on prime time BBC but she also won! Since becoming our patron, Ellie has appeared on several TV quiz shows raising awareness […]
15 March, 2022
Expanding our community support in Northern Ireland
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 […]
9 March, 2022
Outcome of Fundraising Regulator investigation
At the end of 2017, we launched our 12-24 appeal to raise funds for diet and EDS research. While sufficient funds were raised and promising research has begun, following a complaint made in February 2021 about our appeal, the Fundraising Regulator has found that the appeal breached the Fundraising Code and requires EDS UK to […]
8 March, 2022
EDS UK Bake-In 22 Cake winners
EDS UK Bake-In 22 has started and we are delighted to announce the cake challenge winners. Thank you all for taking part and good luck in the upcoming challenges. Full details of the various challenge weeks and how to take part can be found here. Junior Winners: Congratulations to Olivia and Isabelle, who both go […]
14 October, 2021
2021 Christmas Cards available now
Our 2021 Christmas Cards are available to buy from our online shop now! Sold in packs of 10 and featuring eight different designs, there its something for everyone. The cards are 140mm x 140mm and features our logo and information about the charity on the reverse. Priced from only £3.99 per pack our charity Christmas […]
5 October, 2021
EDS UK awarded Disability Confident Leader Award
We are delighted to have been awarded the Level 3 Disability Confident Leader Award. This is the highest level of the award and shows our commitment to support other organisations to become disability confident as well as having embedded practices within our working environment to support staff and volunteers and have good and effective recruitment practice for people with disabilities. The […]
20 July, 2021
EDS UK – 2021 Survey for Members
Our support services rely on successful applications for funders like the National Lottery. Our annual survey helps us to secure funding for the future as well as getting feedback from members. The survey also feeds into the charities strategic plans for the future. It should take you no longer than 7 mins to complete. TAKE […]
27 May, 2021
School toolkit launched to support pupils with EDS or hypermobility-related problems
Today, EDS UK and the Hypermobility Syndromes Association (HMSA) launch an online toolkit for schools to support pupils with EDS and hypermobility-related disorders. The free resource aims to provide school staff with information about symptomatic hypermobility and the Ehlers-Danlos syndromes (EDS) and how they may affect primary and secondary pupils at school. It emphasises that […]
23 April, 2021
EDS UK Bake-In: The winners!
We are delighted to announce the 2021 EDSUK Bake-In winners. The voting in both the adult and junior categories was SO close, but we had two clear winners of the Bake-In. Kat’s ‘follapsed’ zeba cake was a great hit with the Judges in Challenge 1 – not only the design, but also the recipe and bake. Kat, […]
10 April, 2021
EDS UK Bake-In: Easter showstopper challenge winners
We are delighted to announce the EDSUK Bake-In pastry challenge winners. The voting is now open! You can see all our winners and vote for your favourites by visiting our dedicated Bake-In website. Junior Winner Sisters Carlotta and Elise are our Junior winners for the Showstopper challenge and all of the judges agreed that this […]
26 March, 2021
EDS UK Bake-In: Pastry challenge winners
We are delighted to announce the EDSUK Bake-In pastry challenge winners. We move onto pastry next week and full details of how to take part can be found here. Junior (South London): 5 year old Sebastian is our very worthy winner with his amazing strawberry and mango tart! His mum is a zebra and he loves […]
13 March, 2021
EDS UK Bake-In: Bread challenge winners
We are delighted to announce the EDSUK Bake-In bread challenge winners. We move onto pastry next week and full details of how to take part can be found here. Junior: (London region) Zara is 14 years old and has a sister with hypermobile EDS. Zara loves baking to cheer her sister up when she is […]
27 February, 2021
EDS UK Bake-In: Cake challenge winners
As we move onto the bread challenge, our judges have been looking at all the entries. We received an amazing 75 adult and 16 junior entries, thank you all for taking part and good luck in the upcoming challenges. Full details of the various challenge weeks and how to take part can be found here. […]
23 February, 2021
First support group meeting for d/Deaf hard of hearing
We are really proud to announce our first support group meeting, inclusive for d/Deaf hard of hearing. At 1pm on 3rd March our wonderful Newcastle Area Coordinator will be opening up the online Newcastle meeting to anybody from across the UK to join if they have a hearing impairment and need a BSL interpreter to access […]
10 February, 2021
Five new webinars for members in February and March
We are delighted to announce two new webinars which are free to attend for members. You must preregister for the webinars and you can do so with the links below: Buteyko breathing method with Jane Simpson: Saturday 20th February @ 11am Jane Simpson has been an asthmatic since birth and has hypermobility. It was the […]
5 February, 2021
Emeritus Professor Howard Bird
We were sorry to hear today of the death, on 29 January 2021, of Emeritus Professor Howard Bird, former Professor of Pharmacological Rheumatology at the University of Leeds and early medical advisor to EDS UK. Professor Bird provided significant support to Valerie Burrows, the founder of EDS UK, when she set up the first EDS […]
29 January, 2021
All day zoom for Time To Talk Day
Thursday 4th February is Time To Talk Day, a day that aims to bring the nation together to get talking and break the silence around mental health problems. To encourage people to talk, share their experiences and gain strength from others, we will be running a whole day Time to Talk drop in on zoom. Everybody is […]
22 January, 2021
Royal College of GPs to withdraw EDS toolkit
UPDATE 01/02/2021: Following a letter from medical professionals and a petition from patients, we are very pleased that the RCGP has agreed to host the EDS GP toolkit for another six months. This will give us time to find another host and to coordinate updates. Thank you to everyone who has helped to make this […]
17 December, 2020
Summary of Scottish youth consultation
In 2019, The Ehlers-Danlos Support UK commissioned a consultation with young people in Scotland with EDS and HSD. We wanted to find out about their experiences and needs in order to guide a dedicated support programme for young people. This important piece of work was made possible by a fantastic group of fundraisers in Scotland, led by […]
2 April, 2020
A message to our members and supporters from our CEO
COVID-19 is hitting every person and organisation in the world hard, changing the way we live and taking away the freedoms we live by. Charities are unfortunately no different and many small, medium and large charities are having to make difficult and unprecedented decisions which will affect their staff and the very people they are […]
19 March, 2020
Postponement of 2020 vascular EDS conference
We are sorry to announce that we have taken the difficult decision to postpone the vascular EDS conference. We were so looking forward to welcoming you in May, however, following advice from the government and our medical advisors, this is the right thing to do in these uncertain times. If you have booked tickets for […]
19 March, 2020
New online support services launched
In response to the recent outbreak of COVID-19 and the increased likelihood that many of our members may become more isolated than usual, we are moving many of our face to face support groups online and proving two new support services. 1. New weekly online clubs: 2 book clubs, a puzzle club and a […]
12 March, 2020
EDS and coronavirus (COVID-19)
Updated 19 March 2020 It is understandable that people with EDS and associated health challenges are worried about their risk of contracting the new coronavirus which causes the illness COVID-19. As the virus is newly identified, there is very little known about how it affects people and there is no specific advice for people with […]
21 February, 2020
EDS UK signs up to the disability confident scheme
The Disability Confident scheme run by the Department for Works and Pensions, supports employers to break down barriers and make the most of the talents that disabled people can bring to the workplace. Disability Confident organisations play a leading role in changing attitudes for the better, changing behaviour and cultures in their own businesses, networks and […]
5 September, 2019
EDS UK responds to BSR guidance on problem hypermobility in children
We have responded today, with the HMSA, to the guidance published recently by the British Society of Rheumatology on managing symptomatic hypermobility in children and young people. Having supported families affected by Ehlers-Danlos syndromes and the newly redefined hypermobility spectrum disorders (HSD) for over thirty years, we were disappointed not to have the opportunity to […]
11 July, 2019
Wheelchairs for young people with EDS
Thanks to the generous support of The Sandhu Charitable Foundation we are pleased to announce that we will be working with Variety, the Children’s Charity , to make wheelchairs available for children with EDS and related conditions through their flagship event “the PROPS”. Funding is available for powered, manual and sports wheelchairs. Variety works closely […]
31 May, 2019
Mast cell activation expert Dr Lawrence Afrin to talk in London in November
The Academy of Nutritional Medicine is hosting mast cell activation syndrome (MCAS) expert Dr Lawrence B. Afrin MD as part of its annual conference in London on Sunday 17th November 2019. The conference is open to anyone, with discounted tickets for patients. The conference, called MAST CELLS, MOULD AND THE MYRIAD OF DIVERSE FACTORS UNDERLYING CHRONIC […]
1 May, 2019
MAY AWARENESS CAMPAIGN 2019
TIME TO DIAGNOSIS To help raise awareness of the Ehlers-Danlos syndromes and hypermobility spectrum disorders this May, help us to highlight how long it takes to get a diagnosis. Share your #timetodiagnosis image! For many people the journey to a diagnosis of EDS or HSD, has been a long and challenging road. Poor awareness of […]
19 March, 2019
Webinar recording available – get the most for your child from schools and professionals
On Tuesday, March 19th at 11am, the author of Ezra’s Extraordinary Stripes, educational and child psychologist Dr. Louise Lightfoot, came to our office to broadcast a free webinar for EDS UK members on how to get the most for your child from schools and professionals. Members can view a recording of the webinar here. […]
1 March, 2019
EDS UK sign the Rare Disease UK’s open letter to the Government
The Ehlers-Danlos Support UK signed the Rare Disease UK’s open letter calling on the Government to review and refresh the UK Strategy for Rare Diseases. The letter has been signed by over 125 patient organisations in the space of a week and all in time for Rare Disease Day! A copy of the letter has […]
20 November, 2018
Statement on the law regarding cannabis-based products for chronic pain
The following joint statement is from the HMSA, the Ehlers-Danlos Support UK and The Ehlers-Danlos Society on cannabis-based products, chronic pain, and hypermobility-related disorders and is regarding changes in the law in the United Kingdom. This statement is for people with chronic pain and hypermobility disorders such as the Ehlers-Danlos syndromes and hypermobility spectrum disorder (HSD). […]
22 August, 2018
Meet our new Medical Advisory Panel members
We are very pleased to welcome two new members to our Medical Advisory Panel. Lisa Jamieson, pharmacist and nutritionist and Dr Kate Barnes, GP, Integrated Health Practitioner and educator, bring welcome additional knowledge, skills and experience to the panel which advises EDS UK on the provision of best-practice clinical treatments for people with EDS in […]
29 May, 2018
First EDS toolkit launched for GPs
The Royal College of General Practitioners (RCGP) has launched an Ehlers-Danlos syndromes (EDS) toolkit for GPs and healthcare professionals. The toolkit, created in partnership with EDS UK and funded by the charity, aims to improve the recognition, response to and management of EDS in primary care. The toolkit sets out the latest thinking in EDS, including […]
3 April, 2018
Listen to our BBC Radio 4 appeal
Our lovely supporter Toni Madigan tells her EDS story and talks about how she benefited from contacting the EDS UK helpline. Please share information about the appeal and don’t forget to listen! The BBC Radio 4 charity appeal on Sunday 22nd April was for EDS UK. We are so pleased that the Ehlers-Danlos syndromes and the […]
23 January, 2018
Managing EDS and muscle conditioning webinar
EDS UK was proud to host another interactive webinar with Dr. Jane Simmonds on Friday 19th January. She is a physiotherapist specialising in hypermobility-related conditions, practising at both University College London Hospital and St. John and St. Elizabeth Hospital. The recording of the webinar can be viewed here. In addition Jane spent time with us […]
23 January, 2018
Men’s Support Group Survey
EDS UK is looking to run a series of men’s meeting beginning late spring around the UK. Men’s meetings are a little different to local area meetings. They are less formal, and have a more sociable feel. They are for all male members touched by EDS, including patients, fathers, husbands and male carers. Meetings are […]
12 January, 2018
Understanding PoTS webinar
EDS-UK were proud to host a live Q&A webinar on understanding and living with Postural Orthostatic Tachycardia Syndrome (POTS). The webinar featured Dr. Mark Belham, a consultant cardiologist at the Cambridge Heart clinic, Addenbrookes Hospital.
22 September, 2017
NICE guidelines for chronic fatigue syndrome/ME to be updated
Some types of EDS are often misdiagnosed as chronic fatigue syndrome/myalgic encephalomyelitis (ME). EDS UK recently submitted comments on the NICE guidelines for chronic fatigue syndrome/ME as NICE had decided there was no new evidence to warrant an update (the guidelines were written in 2007). As a result of the new information from EDS UK and […]
30 August, 2017
Accessing insurance with a genetic condition
Accessing appropriate insurance can be a significant problem for many patients and families affected by genetic conditions. Genetic Alliance UK regularly receives telephone calls and emails from people affected by genetic conditions who are finding it difficult or impossible to access appropriate or affordable insurance cover. Many patients are not aware what insurance companies are […]
23 June, 2017
Medically unexplained symptoms or EDS?
EDS UK’s Primary Care Advisor Dr. Emma Reinhold had a letter published in The British Journal of General Practice this week highlighting the frequent diagnosis of ‘medically unexplained symptoms’ for people with EDS and related conditions. She called on GPs to educate themselves about how these conditions present. Dr. Reinhold’s letter is the Editor’s Choice […]
8 May, 2017
EDS in the spotlight
EDS UK is proud to be funding a project with the Royal College of GPs to increase knowledge about EDS and related conditions in primary care. Each year, the Royal College selects clinical priorities and 12 month ‘spotlight projects’ and this year, an application by GP Dr Emma Reinhold and EDS UK to make EDS a […]
30 April, 2017
Fundraiser of the Month – April 2017 – Hannah Bowen
Thank you to Hannah who raised an incredible £1,200!! When I was in my final year at school, I became a big sister and mentor to many of the year nines. I jokingly called them my “minions” and loved spending time with them and looking out for them whenever they needed someone older and (not […]
20 June, 2016
First charity partner for NHS Confederation conference
EDS UK member, Lisa Tasker, nominated us to be the first ever charity partner for the NHS Confederation Conference on 15th – 17th June. We were lucky enough to be chosen and this gives us a fantastic opportunity to discuss our EDS services with the policy-makers and NHS commissioners attending. EDS UK’s patron, Cherylee Houston, […]
12 May, 2016
Breaking Down Barriers
We are proud to be working on a new project, funded by The Sylvia Adams Charitable Trust, called Breaking Down Barriers. The project aims to help patient organisations like EDS UK to better support diverse communities. We will be working with eight other charities and a team of experts over three years to see how […]
31 August, 2026
We need your MP to join us in Westminster!
EDS UK has an amazing opportunity to brief MPs in Westminster in person on Tuesday 21st November. We will be taking members of our Medical Advisory Panel and other healthcare professionals to talk to MPs about the need to fund or commission suitable NHS services for people living with hypermobile Ehlers-Danlos syndrome (hEDS)/hypermobility spectrum disorders (HSD), and […]
31 August, 2026
2024 – year in review
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) […]
31 August, 2026
British Society of Rheumatology conference
The Ehlers-Danlos Support UK are at the British Society of Rheumatology Conference this week. Today our Chief Executive Susan Booth gave a short talk with Ceril Rhys-Dillon, Clinical Lead for Rheumatology Clinical Implementation Network, MSK Health Networks and Planning for NHS Wales Executive. The talk explored the role of Rheumatology in the EDS care pathway. […]
31 August, 2026
#enoughisenough campaign update!
EDS UK’s Enough is Enough campaign update Following the tremendous news on Wednesday 10 th Sept 2025 from the House of Commons where Josh Newbury MP told a packed House of Commons the story of his constituent Connor who is living with Ehlers-Danlos syndrome (EDS) and Craniocervical Instability (CCI), we welcomed the response from the […]
31 August, 2026
Our new diet and nutrition programme launches – Nourished©!
Nourished © is the new diet and nutrition project funded by EDS UK for members. As well as some new exciting webinars, we are able to offer individual, 1 hour appointments with our Dieticians Chloe Hall and Alison Holloway. You will be able to discuss your nutrition needs, issues you may be having with gut […]