SearchWe need your MP to join us in Westminster!
- 31 August, 2026
- EDS UK news
EDS UK has an amazing opportunity to brief MPs in Westminster in person on Tuesday 21st November. We will be taking members of our Medical Advisory Panel and other healthcare professionals to talk to MPs about the need to fund or commission suitable NHS services for people living with hypermobile Ehlers-Danlos syndrome (hEDS)/hypermobility spectrum disorders (HSD), and to consult with patients on their design and delivery. After the briefing, a small group of representatives from EDS UK will hand in the #EnoughIsEnough England petition to Downing Street.
We need your help in asking your own MPs to attend. Please email your MP by copying and pasting the text below and personalising it as to why it’s important they go to represent you. Click here and enter your postcode to find your MPs email address.
We need to speak to as many MPs as possible to help drive the changes we need to see.
Suggested email content:
Dear [insert MP name],
As one of your constituents who is living with [insert type of Ehlers-Danlos syndrome or hypermobility spectrum disorder], I would like to invite you to a special briefing for MPs on Tuesday 21st November from 2 pm to 3 pm, with members of the Medical Advisory Panel of EDS UK about the implications of the Major Conditions Strategy for people living with one of the 13 types of Ehlers Danlos syndrome and hypermobility spectrum disorders across the UK.
EDS UK has garnered almost 28,000 signatures for the England petition calling for suitable NHS services to be commissioned for people with EDS. Currently, there are none for the most common type of EDS, hypermobile EDS (hEDS) and hypermobility spectrum disorder (HSD) thought to affect 1 in 500 people.
This briefing will be given by healthcare professionals who need your support in clarifying the steer for NHS England with regards to providing appropriate care and treatment. You will gain from the briefing a clear picture of the desperate situation these constituents are living in and the question to pose when discussing the Major Conditions Strategy. We need to ask the Health and Social Care committee to review the provision of dedicated services for people with hEDS/HSD in England urgently.
Please pop into Room T, Portcullis House any time for 10-15 minutes on Tuesday 21st November between 2:00 pm and 3:00 pm to meet the representatives from EDS UK. Short speeches will be held at 2.15 pm – 2.30 pm.
[INSERT YOUR FULL NAME]
[INSERT YOUR ADDRESS]