News and events

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, […]

15 April, 2021

New children’s picture book raising funds for EDS UK

Emily Joshua has written a new children’s picture book called Big Dog, Little Dog or Someone In-between. The book features a character with hEDS and is also raising funds for The Ehlers-Danlos Support UK. The author describes the book as: This is a story about a family trying to work out which puppy will be […]

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 […]

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 […]

18 May, 2020

My Journey to Diagnosis and Beyond

by Lyndsay McIntyre My HSD first became apparent when I was three. Well apparent to me anyway. At birth, doctors were concerned about my hips, then quickly dismissed this. By age three, I discovered that my thumbs bent back and that some of my other fingers could ‘lock’ (swan neck deformity). There was always talk […]

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