We want to take time out to celebrate all the incredible women involved in fighting for those living with EB.
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International Women’s Day
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News and Stories: Rare disease
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Rare Disease Day 2020
Rare shouldn’t mean…Ignored…Forgotten…Set aside…Abandoned.
Rare Disease Day takes place on the last day of February each year. But rare disease isn’t just a day. For the 300 million people worldwide living with rare disease, 500,000 of which live with EB, it’s every day. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
What is EB?
(Infographic created by FIENDISH.com)
Epidermolysis Bullosa (EB) is a group of rare genetic skin conditions, which is characterised by extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma.
Read MoreA European clinical network will improve clinical care for EB
There has been much activity across Europe recently to establish rare disease European Reference Networks (ERNs), “groups of highly specialised providers across the EU”.
Read MoreAmicus 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)
Read MoreAn 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.
Read MoreWhy 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.
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