As another indicator of the progress made this year in relation to raising awareness of EB and of DEBRA, we were really encouraged to be invited to a recent All Party Parliamentary Group on rare genetic and undiagnosed conditions.

The 11th of December meeting, which was chaired by Liz Twist, Labour MP for Blaydon, took place at Portcullis House in Westminster and was attended by DEBRA’s Director of Research, Dr Sagair Hussain who spoke about the research we are funding at DEBRA to try and stop the pain of EB.

The meeting was also attended by Louise Fish representing Genetic Alliance UK, of whom DEBRA is a member, and Melita Irving, Consultant in Clinical Genetics at Guy's and St Thomas' Hospital, London.

This is the first of what we hope will be regular participation in this APPG as we seek to form stronger alliances with politicians and other rare disease groups as we seek to ensure wider government support for the rare disease community has a whole including those living with EB.