DEBRA News
June 18th 2013
Outreach Clinic makes real difference to people living with EB
DEBRA is delighted to announce that a new specialist outreach clinic for people living with Epidermolysis Bullosa (EB), a rare and painful genetic skin-blistering condition, held in Cromer on 21 May, has been a huge success.
April 29th 2013
DEBRA secures ongoing NHS funding for the National Scottish EB Nursing Service
DEBRA is delighted to announce some important changes to its Nursing Service which take place with immediate effect.
April 25th 2013
Are we close to real treatments for EB?
What will future therapies look like? Six of the world's experts talk about their hopes for the future of treating people with EB. Click below to view the clip: http://www.youtube.com/watch?v=DIpKZFCu3Q0
April 19th 2013
What would you like to see implemented in a Centre of Excellence?
Rare Disease UK is undertaking a project which will capture the requirements of those affected by a rare disease and all who support them and develop a clear understanding of a Centre of Excellence.
March 6th 2013
Groundbreaking new wound care garment for Epidermolysis Bullosa patients
Skinnies WEB™, which have been designed in partnership with EB patients, carers and clinicians, a clothing designer and a manufacturer, will help to reduce the burden of EB wounds on a day-to-day basis and therefore greatly improve quality of life for patients.
February 11th 2013
Large pharmaceutical spotlight on EB
In big news for the EB community, it was announced on Tuesday that the global pharmaceutical company, Shire, has signed an agreement to acquire Lotus Tissue Repair, the biotech company currently developing a protein replacement therapy for dystrophic EB (DEB).
October 1st 2012
Update on EBSTEM
Prof. McGrath and his team have asked us to update the EB community on the current position with regard to the proposed clinical trial in the UK involving the infusion of mesenchymal stem cells as a potential therapy for RDEB.