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: International News
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
Emma Watson supports EB
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.
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‘Butterfly child’ dreams of the Northern Lights
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.
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