Invite your MP to come and meet EDS UK and healthcare experts on the 8th December

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• 13 November, 2025

EDS UK is holding an MP drop in session on Monday, 8th December between 2:15pm and 3:45pm in Portcullis House. We need you to write to your MPs again please and ask them to pop into the drop in and talk to us about how they can help.

Last week we asked you to write to your MPs to invite them to the Overlapping Illnesses Alliance drop in on the 25th November. This week, please invite them to the EDS UK session as well.

We hope by having another session, we can make sure those who can’t make the 25th November can make the 8th December instead.

At the 8th December session, we will have healthcare professionals with us to provide an expert view of the systemic changes we are calling for to improve patient care for everyone living with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) in the UK.

How you can help

• Make a donation HERE to help keep the momentum of the Enough is Enough campaign going.

• Write to your MPs, even if they are the same ones as last time. You can find your MP here. You can find helpful text to copy, paste and personalise below.

• Repost EDS UK social media posts to reach as many people as possible @ehlersdanlosuk (X, Instagram, Facebook, TikTok, LinkedIn).

• Please let us know their response by emailing voices@ehlers-danlos.org

Thank you!

MP email template

Dear xxx MP

I am writing to you as a constituent to ask for your help. EDS UK is in conversations with the Minister for Public Health and Prevention and their team to ensure the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) are included in the planning for long-term and chronic conditions.

Please will you and/or your team pop into an MP drop-in to speak to EDS UK and healthcare experts on the 8th December, between 2:15pm and 3:45pm in room P of Portcullis House?

EDS UK is working to progress the following:

• A pathway for NHS diagnosis and care

• Agreed guidelines

• A coordinated, multidisciplinary approach to diagnosis and care, integrated across primary and secondary care

• Support and training for healthcare professionals

[Space here to add information about your own experiences].

Since 2023, the largest UK charity for EDS and HSD, The Ehlers-Danlos Support UK, has co-ordinated petitions garnering over 33,000 signatures. They have co-created with an NHS working group, a draft NHS primary care pathway in Wales, met with the Department of Health in Northern Ireland, had the Scotland petition discussed in evidence sessions and at a round table debate and in May 2024 a Westminster Hall debate in England. The need for a coordinated approach to NHS care is urgent and MPs have a vital role to play in advocating for the community. So please do attend the drop-in to find out more.

The Ehlers-Danlos syndromes are connective tissue disorders with body-wide symptoms which can be disabling, affecting all aspects of life. Symptoms include musculoskeletal problems, chronic pain and fatigue, gastrointestinal disturbance, pelvic and bladder problems, autonomic dysfunction and anxiety. There is no single test for the most common type hypermobile EDS (hEDS), which makes diagnosis challenging. Hypermobility spectrum disorders (HSD) present many of the same symptoms and share the same diagnostic challenge. Together, hEDS and HSD are fairly common (possibly affecting 1 in 500 people).

Thank you so much for your time and help.

Yours sincerely,

[Insert Name and Address]