EDS UK news

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 […]

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 […]

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


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 […]

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