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 since then underpin the significant hope that this is no longer the case.
There are now two approved topical treatments for EB which improve localised wound healing, and cutting edge techniques like gene editing are bringing forward treatments for other conditions. We want EB to be next, and to achieve whole body treatments so that lives can be changed and lengthened.
Our aim is to accelerate research, take results and aid translation into treatments.
But there is a critical funding gap between lab based research and translation into the clinic which we need to fill. We need the funds so that key projects can harness research optimism and create change for this most diabolical of conditions. EB is considered rare and as such there is little governmental research funding available.
