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Cure EB

Children with EB are called Butterfly Children. Their fragile skin blisters and tears easily and they suffer from burn like wounds internally and externally. It is constantly painful, disabling and is life limiting in severe forms due to a particularly aggressive skin cancer that develops in early adulthood. Our mission is our name, to Cure EB. We fund pioneering research through to clinical trials aiming to accelerate the path towards treating and curing this devastating condition.

www.cure-eb.org Fundraise for us


Registered charity no. 1158672

Member since January 2022

About us

Cure EB was set up in 2011 by Sharmila & James Collins, the parents of Sohana who has an aggressive form of EB. When Sohana was born there were no effective treatments or any prospect of a cure and she has endured pain every minute of every day of her life.

Cure EB exists to treat and cure EB, with particular focus on transferring gene modifying and gene corrective strategies into treatments and ultimately a cure. There is currently no government funding allocated towards EB research, therefore all research relies solely on charitable donations. With 100% of all given to Cure EB invested into research, our goal is to ensure meaningful treatments and ultimately a cure for all those suffering with EB.

Children with burns would not and should not be ignored. Nor should those who suffer EB. It is possible to give real hope for children with EB to live a life free of pain.