DEBRA Australia

 

DEBRA Australia offers advocacy, financial support, emotional support and networking opportunities to families who are living with EB. DEBRA Australia also uses donations to fund local and international research into a cure for EB. Our aim is to work for a life free of pain.

 

Epidermolysis Bullosa is rare skin disorder, both within Australia and globally. For many years, individuals and small state DEBRA groups had been the primary source of services and support for families struggling with an EB skin disorder. A collaborative effort was made by the states in 2005 when we officially founded DEBRA Australia, in order to create a larger network of support for these Australian families. 

 

DEBRA Australia objectives are to:

• Educate and support families living with Epidermolysis Bullosa (EB)
• Investigate and implement programs to help EB sufferers to improve their care and quality of life
• Offer financial and emotional support and also networking opportunities to families
• Educate health professionals and the general public about EB
• Raises awareness of this orphan disease
• Raise vital money for Research to one day find a cure
• Maintain DEBRA International membership to combine resources and networking opportunites

Epidermolysis Bullosa (EB) encompasses a group of at least 12 separate genetic diseases of the skin and sometimes the mucous membranes. It is characterised by skin fragility with blister formation occuring spontaneously or following minor trauma. EB can be broadly divided into three major catagories that are recognised accordingly: Simplex, where cell lysis occurs in the epidermis; Junctional, where the separation occurs within the dermal-epidermal junction, and Dystrophic, in which the plan of cleavage is below the basement membrane in the dermis. These catagories can be further subtyped based on inheritance and clinical features.