DEBRA (Epidermolysis Bullosa)
DEBRA is the national charity that supports individuals and families affected by Epidermolysis Bullosa (EB) – a painful genetic skin blistering condition.
DEBRA provides an enhanced EB Healthcare Service, in partnership with the NHS, to deliver optimal healthcare to children and adults living with EB and community support staff to work directly with individuals and families. DEBRA also provides information and help to anybody living or working with EB, including carers and healthcare professionals, and funds pioneering research to find effective treatments and, ultimately, a cure for EB.
The aims of DEBRA are to fund research into Epidermolysis Bullosa, to promote the welfare of people with the condition and to educate the public and professional audiences about EB.
DEBRA research grants are awarded on the basis of peer review, twice yearly for work which is relevant to Epidermolysis Bullosa (EB). These are mainly project grants of up to 3 years but a research fellowship in the department of dermatopathology at St John's Institute of Dermatology is also awarded. In some projects a PhD studentship has been created where the need was not for a post doctoral worker. A limited number of programme grants are awarded.
We are particularly interested in work on, (1) genetic aspects of EB, which might eventually have therapeutic implications, (2) cancers in EB, (3) wound healing in EB. Some clinical research is also funded. Closing dates for applications are the 1st April and 1st October each year. Application forms available from the DEBRA office, or can be downloaded from www.debra-international.org
DEBRA funds 3 specialist nurses for children with based at Great Ormond Street Hospital and two specialist children's nurses based in Scotland. In addition, 6 specialist nurses for adults with EB are employed and 11 part-time regional EB care managers. Contact can be made with these professional staff either directly or via the DEBRA office
DEBRA publishes a wide range of information materials, some aimed at patients and others for the professional audience. All are free and can be supplied in quantity to dermatologists.
Ms Claire Mather
13 Wellington Business Park
Dukes Ride, Crowthorne
Berkshire RG45 6LS
Tel: (01344) 771961
Fax: (01344) 762661