News and events

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 […]

15 June, 2023

Emeritus Professor Peter Beighton

We were sorry to hear today of the death, on 14 June 2023, of Emeritus Professor Peter Beighton, whose work (together with his wife’s) led to the Beighton score, a method to assess joint hypermobility. Professor Beighton’s lifelong research involved inherited disorders of the skeleton and connective tissues and other genetic conditions and he was […]

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 […]

28 March, 2023

Jane Simmonds wins an EDS UK Community Champion Award

We are absolutely delighted to give Dr Jane Simmonds a Community Champion Award. Jane has supported both the charity and our community for many years, making her a most worthy winner. Jane is a specialist musculoskeletal and exercise rehabilitation physiotherapist with over 20 years of clinical experience, and leads the Physiotherapy provision in the Hypermobility Unit. […]

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 […]

6 February, 2023

Anna Higo is our first Community Champion of 2023

Anna completed her BSc (Hons) in Physiotherapy at the University of Liverpool and became a Chartered Physiotherapist in 1997. Her specialist areas are the shoulder, spinal care, hyper mobility and Ehlers Danlos Syndrome. She become involved with HSD and hEDS after suffering with a poorly understood illness herself during pregnancy. This gave 9 months of […]

24 November, 2022

New EDS and HSD primary care study in Northumberland

A GP in Northumberland is leading research in the area looking at how many people have an Ehlers-Danlos syndrome (EDS) or a hypermobility spectrum disorder (HSD) and how this impacts their use of the healthcare system. Lead researcher Dr Ben Frankel, who has a personal interest in EDS, is leading a team looking at how […]

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 […]

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