On September 13th, DEBRA UK held a reception within Scottish Parliament at Holyrood in Edinburgh. This was the latest step in their campaign to raise awareness of EB and the need for government support to help accelerate their drug repurposing programme.
DEBRA UK members from across Scotland and members of the EB research community attended. The speakers included DEBRA President Simon Weston CBE, Vice President Graeme Souness, and DEBRA members Andy Grist and Lucy Beall Lott. Andy and Lucy both shared moving testimonies of the impact EB has on their lives.
Jenni Minto, Minister for Public Health and Women’s Health, also gave a speech about the need for patient voices to be heard for all rare diseases, including EB. She gave her commitment on behalf of the Scottish government to ensure that people living with EB get the healthcare support they need. It was so encouraging to see government ministers attend, speak with our members, and learn more about EB and what UK government supported is needed to best support the EB community.