Cure EB (formerly Sohana Research Fund) exists to fund research and clinical trials aiming to #cureEB. Epidermolysis Bullosa is a very painful genetic skin condition that causes blistering and skin loss at the mildest friction. It affects internal and external skin and severe forms are life shortening due to a malignant skin cancer that develops in early adulthood. Our focus has been on cell and gene therapy research with a view to rapid translation to clinical use.
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Cure EB (formerly Sohana Research Fund) is dedicated to finding effective treatments and a cure for Epidermolysis Bullosa. It was set up in 2011, by the parents of Sohana Collins, a young child with a severe form of the condition.
When Sohana was born in 2002, there was very little prospect of an effective treatment let alone cure, but breakthroughs in research underpin the significant hope that this is no longer the case.
Critical funding is required for key projects that will harness this research optimism. EB is considered a rare condition and as such does not attract government funding. This means that all research is private donor and private company led. Our aim is to accelerate research, take results and aid translation into treatments.
With the real hope of safe effective treatments and possibly a cure within sight, delays to funding will only compound the suffering of all children alive with the condition today.
Children with burns would not and should not be ignored. Nor should those who suffer EB. This is a chance to make a difference to an incredibly painful, disfiguring and ultimately fatal condition.
‘Watching Sohana suffer the agonising pain of EB every day is the best incentive to push forward research to find a treatment for all. Medical miracles happen but they need help to happen in the form of dedicated research funding’. Sharmila (Sohana’s mother, Founder and Trustee)