Registered Charity
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About us
Who we are
Our name is our mission - to cure EB.
Cure EB is dedicated to finding effective treatments and ultimately a cure for Recessive Dystrophic Epidermolysis Bullosa (RDEB) and other forms of EB. EB is a devastating genetic skin condition that causes blistering and skin loss at the slightest friction. It is like having very severe burns, outside and inside, and eventually leads to skin cancer. It is “Hard to say. Hell to live with” and children with the condition live in constant pain.
There are up to 5,000 children and adults living with EB in the UK and 500,000 worldwide. One of these children is 19-year-old Sohana Collins, who won a Pride of Britain award for being a child of courage in 2015. Watching Sohana suffer the pain of EB every day was, and still is, the incentive for Sohana’s parents, James and Sharmila Collins, to push forward research to find a treatment for all. This is why they established Cure EB (formerly the Sohana Research Fund).
Currently there is no cure, but after years of painstaking basic research, clinical trials are happening in the UK and around the world. We fund projects that have translational possibilities which means that we do not generally fund basic laboratory research. The majority of our projects are late stage pre-clinical and clinical trials, with a particular focus on gene modifying and gene corrective strategies.
We are developing initiatives to aid translational research. We do fund projects and clinical trials on our own but we are very open to collaborating with other organisations, to pool resources, maximise impact and have a good relationship with global EB research funding organisations. With the increase in biotech interest these relationships are broadening.
In recent years Cure EB has been the largest funder of RDEB research in this country and one of the biggest in the world. It is also one of the only charities in the world dedicated to researching the condition.
Cure EB has its running costs underwritten so that 100% of all donations are invested in research.
