There has been much activity across Europe recently to establish rare disease European Reference Networks (ERNs), “groups of highly specialised providers across the EU”. Continue reading
Amicus Therapeutics will acquire Scioderm for its Zorblisa (topical 6% allantoin for the treatment of epidermolysis bullosa) Continue reading
Working closely with Dr. Wenxin Wang and his team of EB researchers, DEBRA Ireland organised an exciting afternoon of EB research on the last day in January, 2015. Continue reading
Emma Watson recently tweeted a message about EB to her 15 million followers in support of Sohana Collins, a twelve year old who was born with EB.
Nothing, but nothing, is easy in the life of 14-year-old Jonathan Pitre — save for the sleep that descends on him each evening in a cloud of methadone.