News and events

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 […]

19 February, 2021

EDS UK member Mandy McCreight on next week’s DIY SOS

Next week’s DIY SOS features EDS UK member Mandy McCreight and her family from Bangor, Northern Ireland. The episode airs on Monday 22 February at 9pm and will show the transformation of the family’s home to make life easier for Mandy who has EDS and associated conditions. The show, which has helped several people with EDS, often […]

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 […]

28 July, 2020

The first ever virtual edition of Prudential RideLondon

The first ever virtual edition of Prudential RideLondon – the world’s greatest festival of cycling – will take place on 15 and 16 August (the event weekend) to celebrate cycling and raise funds to help save the UK’s charities. The Ehlers-Danlos Support UK, like many other charities, has been hugely impacted by the Covid-19 pandemic […]

1 June, 2020

Volunteer week 2020

Volunteers week is an annual celebration of the contribution that millions of people make across the UK through volunteering.  Here at EDS UK we want to celebrate and thank our volunteer Area Coordinators and our Trustees who give their time to make a difference. Our volunteers give over 1000 hours over the year to support […]

More News Articles

Charity news, patient stories, events, reearch & Ehlers-Danlos in the press