February 15, 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 long waiting lists and a lack of specialists, webinars such as Jeannie’s provided an excellent place to access helpful and practical information on the management of HSD and EDS.
December 14, 2023
Wales #EnoughIsEnough petition update
On 11th December The Welsh Petitions Committee debated the Health minister's response to our campaign for suitable NHS services for people in Wales with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) . Petitions Committee member Joel James explained how he is supporting the petition as a Senedd member, by writing to the Health Boards, sponsoring a drop-in event in early 2024, and supporting EDS UK by posing its questions to the Health Minister. This had the agreement of the Committee.
November 27, 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.
November 3, 2023
Two new EDS UK Community Champions
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 and Cancer in the University of Edinburgh and Dervil Dockrell, Clinical Specialist Occupational Therapist in the Rheumatic Diseases unit at the Institute of Genetics and Cancer in the University of Edinburgh.