Cure EB (formerly the Sohana Research Fund) is a UK registered charity which exists to find a cure for Epidermolysis Bullosa (EB) - a very painful genetic skin blistering condition that leads to malignant skin cancer in young adulthood. It's "Hard to say. Hell to live with"
EB is a devastating, disabling and life shortening condition which affects 500,000 people worldwide and up to 8000 in the UK. At its most severe, the whole body is affected - including the eye surface and the linings of the mouth, throat and oesophagus. Some forms are fatal in infancy. Those that live beyond infancy battle non healing, excruciatingly painful blisters and wounds which lead to deformity and significant disability. Cure EB (formerly the Sohana Research Fund) is dedicated solely to research and aims to accelerate progress towards effective treatments and a cure. It was set up by the parents of a young sufferer and since its inception it has funded 3 clinical trials and groundbreaking research projects.