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
A European clinical network will improve clinical care for EB
News Archives: Rare disease
Amicus are to acquire Scioderm and further develop their EB wound healing cream
Amicus Therapeutics will acquire Scioderm for its Zorblisa (topical 6% allantoin for the treatment of epidermolysis bullosa) Continue reading
An afternoon of EB research to brighten the last day of winter
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
Why it is not always good to be rare
Emma Fogarty, who lives with the rare disease EB, challenges our notions on what it means to be rare, on Rare Disease Day. Continue reading