On Monday 19th June, we held an evening reception at the House of Commons to raise awareness of the incredibly painful genetic skin blistering condition, EB, and the need for government support to find effective drug treatments.

Speakers on the night included, Bracknell MP, James Sunderland, who sponsored the event, DEBRA President, Simon Weston CBE, and fresh from swimming the English Channel to raise funds for DEBRA, ex. Liverpool and Scotland footballer, Graeme Souness.

 

Other speakers at the event, included Shadow Health Secretary, Wes Streeting, who spoke about the need for cross party collaboration to support people living with rare diseases, such as EB, and Professor Chris Griffiths OBE, a leading dermatologist who spoke about the opportunity that exists to significantly improve quality of life for people living with EB through drug repurposing.

 

We were also joined by a number of our members from the EB community to share their lived experience of EB.

 

Commenting on the reception, Tony Byrne DEBRA CEO said

The EB community needs effective drug treatments that will help stop the pain of EB now, they cannot wait, which is why we need government financial support to be able to clinically test drugs which are already available within the NHS for other skin conditions, so that they can be made available for people with EB too. It was encouraging to see a good number of MPs attend the event last night and to see them chatting with members of the EB community. We hope we can count on their continued support to get the government financial backing that the EB community so desperately needs. With their support we can stop the pain of EB.