SearchMay awareness month
Make May Matter
May is EDS and HSD Awareness Month. This year, we’re asking our members and community to get involved and help raise awareness of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
Whether you want to share your experience, support a campaign or fundraise, there are lots of ways to get involved:
Campaign with us
Through our Enough is Enough campaign, thousands of you have contacted your MPs, shared your experiences and pushed for change. Together, we’re making sure EDS and HSD are being heard in Parliament and across the NHS.
This May, we’re building on that momentum. Make May Matter is about continuing that push and making sure decision-makers understand what EDS and HSD are, how they affect people, and why better care is needed.
We’ll be sharing ways to contact your local MPs, MSPs, MEPs and other local representatives and raise awareness of EDS and HSD during May.
EDS UK is leading the way – working across all four nations to build better diagnosis pathways and improve access to care.
Hear Us
This May, we’re launching EDS UK Voices.
EDS UK Voices is about sharing what living with EDS and HSD is really like – what is difficult, and what helps – so we can show what care and support are needed.
That might be:
- tips that make daily life easier
- support that’s made a difference
- or your experience of finding the right care
You can take part in a way that suits you:
- a short written story
- a photo and quote
- a short video
- or supporting posts during May
You can email us on voices@ehlers-danlos.org
Dazzle Walk
Don your razzliest, dazzliest zebra attire and join us for Dazzle Walk 2026.
This May, choose a time, location and distance that works for you and raise funds for EDS UK.
Dazzle Walk is an inclusive event. Whether you’d like to walk it, wheel it or use other aids, you can take part in a way that works for you, at any time during May!
Register here
Order awareness materials
Help raise awareness where you live. You can order leaflets and materials to:
- share with your GP or healthcare team
- raise awareness locally
- support your own events
Order your materials by clicking here
Become a member
Join EDS UK today and:
- access support and information
- join support groups
- take part in campaigns and research
You can join us here
Thank You
Whether you share your story, take part in Dazzle Walk or donate — it all adds up.
£15.00 could help us answer a call from somebody who suspects they may have EDS or HSD. Answering questions and giving them the confidence to push for a diagnosis.
£10.00 a month for a year could help us to respond to 12 emails from young people who are newly diagnosed with EDS or HSD. Providing tailored support, guidance and signposting at a time of uncertainty.
£30.00 could help us provide support for people experiencing worsening of their symptoms. Making debilitating symptoms like extreme pain and severe fatigue easier to cope with.
Every action helps us move closer to fairer, faster diagnosis and better support for everyone living with EDS and HSD.
We couldn’t do it without you.
Join the Dazzle Walk
Don your razzliest, dazzliest zebra attire and join us for Dazzle Walk 2026!
This May, choose a time, location and distance that is right for you and get walking to raise funds for EDS UK. Dazzle Walk is an inclusive event. Whether you’d like to walk it, wheel it or use other aids – we encourage you to get involved however you can.
Get involved online
Follow our social channels and share our May Awareness posts. Throughout May we will be posting interesting facts about EDS and HSD, real life stories and much more. Share our posts with your own followers to help increase awareness around EDS and HSD.
Friday 15th May is #REDS4VEDS
#REDS4VEDS Day is a global campaign that takes place on the third Friday of May each year to help raise awareness of vascular Ehlers-Danlos Syndrome (vascular EDS), a rare genetic disorder.
REDS4VEDS was launched in May 2015 and is hosted by Annabelle’s Challenge. The campaign continues to gain momentum year on year, helping to raise awareness for those who are touched by vascular EDS. It is also a great way to raise vital funds for research.
Order your awareness items today
Visit our online shop to order your awareness items today. Leaflets, posters, badges, t-shirts and wristbands are all available to order individually or why not order one of our awareness packs.