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Epidermolysis Bullosa: Links to EBFor epidermolysis bullosa (EB) sufferers and their families in Australia, there are a few support groups and articles from various hospitals and associations: DEBRA Australia (Dystrophic Epidermolysis Bullosa Research Association of Australia) is a support group for EB sufferers in Australia. An article in e-bility from the Robyn Gobert, past president of DEBRA Australia about how she has dealt with the disease and how her family have coped. DEBRA support for South Australian sufferers and their families Royal Melbourne Children's Hospital's (RCH) fact sheet on EB sufferers, focusing on children care, therapy and information. The National Epidermolysis Bullosa (EB) Dressing Scheme (commencing 1 January 2010) assists eligible people with epidermolysis bullosa to meet the high cost of specialised dressings in Australia. Australasian Blistering Diseases Foundation on Inherited Blistering Diseases which include EB Life with Epidermolysis Bullosa: Etiomology, Diagnosis, Multidisciplinary Care and Therapy by Jo-David Fine is available through Borders |
