12/09/2025
This to me (Lisa) has made all Fran did on her walks with Pathway to Parliament and what Steph & I did supporting her in 2013 & 2024 so worthwhile.
Our voices will now be heard as EDS was spoken about again in Parliament and this time taken notice of at Primeministwr Question Time. Josh Newbury MP along with his constituent and stories others have shared with them will be taking our fight directly to the Health Minister.
Thank you Josh Newbury MP for raising Ehlers-Danlos syndrome (EDS) and Craniocervical instability (CCI) with the Prime Minister today in PMQs. The PM’s response filled us with joy:
“I will make sure he gets the meetings that he needs so we can hear from Connor and others and learn from their experience.”
At last, the meeting promised in May 2024 will finally happen. This means our community’s voice is being heard at the highest levels of government.
For us at The Ehlers-Danlos Support UK, this is more than a meeting. It is recognition that the voices of people living with EDS and HSD in the UK deserve to be heard and that their experiences must shape the future of care.
This is how we will achieve our vision of 'Across the UK, people with EDS or HSD will be connected, heard, supported and have equitable access to care.'
Thank you to everyone in our community who continues to raise their voices. Together, we are being heard. Together, we are making change happen.
