Epidermolysis Bullosa (EB) is a rare genetic skin disorder which is characterised by skin fragility with blister formation occurring spontaneously or following minor trauma.
The Government committed $16.4 million over four years to establish the National Epidermolysis Bullosa Dressing Scheme (the Scheme) to support eligible people in meeting the high costs of treatment. The Scheme which commenced on 1 January 2010, is administered by BrightSky Australia, a division of the Paraplegic and Quadriplegic Association of New South Wales, on behalf of the Australian Government.
Although there is no cure for EB, and gene therapy is still in the realm of experimental medicine treatment of EB is directed towards the symptoms.
A parent with an autosomal dominant form of EB has a 50:50 chance with each pregnancy of transmitting the abnormal gene.