Epidermolysis Bullosa (EB)
Last year my niece was born with the incurable disease Epidermolysis Bullosa or EB for short. At this moment there is no cure for this genetic skin disease, and a lot of research is needed to find a cure. Most children that are born with it might not live longer than a few months to a few years depending on the severity. My niece has a mild version of EB and has a normal life expectancy, but needs extra care her whole life.
At the moment we are doing a lot of things to get more attention to this disease, and that is the reason for posting it here.
You can find more information in Dutch on http://www.vlinderkind.nl or http://www.debra.org/whatiseb for an English explanation.
It is the worst disease you've never heard of
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