Important Enough is Enough campaign update

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• 31 July, 2025

Our Chief Executive Susan Booth has announced an important Enough is Enough campaign update.

I was delighted to meet with Josh Newbury MP and his team in Westminster a couple of weeks ago. We discussed The Ehlers-Danlos Support UK’s #EnoughIsEnough campaign (which gained over 33,000 signatures across the UK) and reflected on the work we led with Andrew Selous MP in securing and delivering the Westminster Hall debate on EDS and HSD in May 2024.

Josh shared the deeply moving story of his constituent, Connor, whose life has been completely shattered by EDS and craniocervical instability. I spoke about the urgent need for a national multidisciplinary team and primary care pathways, so that people across the UK living with EDS and HSD can access equitable and effective care. I had only just spoken at a national conference the week before on these exact issues.

That’s why I was so pleased to hear Josh speak during last week’s summer adjournment debate, calling for support for his application for a Backbench Business Debate. He said of our May 2024 debate: “Those who spoke so powerfully never had the opportunity to meet the Minister. This cannot be where this debate ends.”

He’s absolutely right.

Josh also said “This is about everyone, not just waiting for treatment – but waiting for someone to believe them.”
Watch his speech here: https://www.youtube.com/watch?v=JZguiUvgI1A 

We are proud to support Josh in pushing forward this debate and pressing for that long overdue meeting with the Minister. As the leading UK charity for EDS and HSD we will ensure that the voice of the community continues to be heard loud and clear in Westminster.

Please join us as a member of EDS UK – you’ll be the first to hear how to get involved in our campaigns and be part of driving real systemic change. https://www.ehlers-danlos.org/membership-account/membership-levels/