The SRF is dedicated to finding effective treatments and a cure for Recessive Dystrophic Epidermolysis Bullosa. It was set up in late 2010, 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.
It is critical that funding is achieved for key projects that will harness this research optimism. Delays in funding the research, will delay results and compound the suffering of all children alive with the condition today.
RDEB 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. With the real hope of safe effective treatments and possibly a cure within sight, it would be travesty not to be able to undertake the research necessary. 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.
‘As parents it is difficult to smile and remain positive whilst inside we are screaming for help for our child and others like her. Those who have so much to give but who are limited, so ruthlessly by their faulty skin; skin that most of us take for granted.Medical Miracles happen but they need help to happen in the form of dedicated funding’.
Sharmila (Sohana’s mother)
Fight for a Life Free of Pain.
To End EB. Research the Cure.
Who we are