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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