On Wednesday 13th September, DEBRA held an evening reception within the Scottish Parliament at Holyrood in Edinburgh.

The evening, which was kindly sponsored by Bob Doris MSP for Glasgow Maryhill and Springburn, was the latest step in our campaign to raise awareness of EB and the need for government support to help accelerate our drug repurposing programme.

Bob Doris MSP speaks at DEBRA Scottish Parliament reception

DEBRA members from across Scotland, plus members of the EB research community attended the reception which included powerful speeches from DEBRA President, Simon Weston CBE, Vice-President Graeme Souness, DEBRA members Andy Grist and Lucy Beall Lott, who shared moving testimony of the impact EB has on their lives, and Professor Gareth Inman who spoke about the opportunity that exists to radically improve quality of life for people living with EB through drug repurposing.

Left: DEBRA President, Simon Weston CBE Right: DEBRA Vice-President Graeme Souness

Left: DEBRA Member, Andy Grist Right: DEBRA Member, Lucy Beall Lott

We are very grateful to everyone who attended the evening including Jenni Minto, Minister for Public Health and Women's Health, who spoke about the need for patient voices to be heard for all rare diseases including EB and gave her commitment on the behalf of the Scottish government to ensure that people living with EB get the healthcare support they need.

Left: Professor Gareth Inman Right: Jenni Minto, Minister for Public Health and Women's Health

Commenting on the reception, Tony Byrne DEBRA CEO said

It was a pleasure to be able to host DEBRA members at Holyrood last night and it was very encouraging to see several government ministers attending the event and chatting with the members of the Scottish EB community in attendance to find out more about EB and how it affects their lives. We cannot find effective treatments for EB on our own and need government support across all the devolved nations including Scotland to ensure that the EB community across the UK gets the healthcare support and treatments they desperately need. We hope we can count on the minister’s ongoing support. Together we can stop the pain.