The Phoebe Research Fund is a small registered charity (1163875) based in Stamford Lincolnshire. Founded in February 2015 by myself, Zoe Crowson, to facilitate funding towards a possible cure for my daughter Phoebe and fellow Epidermolysis Bullosa Sufferers like her. There are only 5000 EB sufferers in the UK of which 1000 have more severe forms. In effect Phoebe has a rare form of a rare disease, RDEB Recessive Dystrophic Epidermolysis Bullosa and in actual fact it took St Thomas’s Hospital 3 months to determine the type, a situation that would normally take just 24 hrs.
The idea of The Phoebe Research Fund is that because it’s so rare, finding a cure is in fact harder as there is currently no government funding. There are three types EBS, RDEB and JEB, vary widely in the type and severity of symptoms, and the impact on the patient’s life.
All funds raised by The Phoebe Research Fund will go directly to beneficiary CURE EB (1158672) a national charity founded by Sharmila and James Collins parents to Sohana another RDEB sufferer.