Simon Weston with representatives of Seneed Cymry
John Griffiths MS for Newport East with Eluned Morgan MS and Minister for Health and Social Services, with DEBRA President, Simon Weston CBE.

 Yesterday (Tuesday Oct 3rd) we held an event at the Senedd Cymru (Welsh Parliament) in Cardiff where DEBRA members from across Wales, joined DEBRA President, Simon Weston CBE, and DEBRA’s Director of Research, Dr Sagair Hussain, in meeting members of the Senedd (MS).

The meeting in the Ty Hywel building was timed to coincide with Tuesday’s Plenary, which is the meeting of the whole Senedd that takes place in the debating chamber.

By holding the meeting just before the Plenary this guaranteed access to more ministers and members including Eluned Morgan, Minister for Health & Social Services in Wales. Through DEBRA members kindly sharing their experiences of living with EB, and their hopes for improved access to EB specialist healthcare and effective treatments, we hope that the MSs who attended came away with a better understanding of EB and the impact it has on the members of the EB community who live within their constituencies.

DEBRA members at Seneed Cymru.

We would like to thank Joel James MS for South Central Wales, who was the event sponsor, and the DEBRA members, and Simon Weston who attended yesterday’s meeting.

As a follow on, we will reach out to Eluned Morgan to request a meeting with her to discuss the support we need from the Welsh government to help improve access to specialist healthcare for the EB community in Wales today, whilst we continue to work on progressing our drug repurposing programme and securing effective treatments for all types of EB.