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About DebRA Australia
Epidermolysis Bullosa is rare skin disorder, both within Australia and globally. For many years, individuals and small state 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 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.
In brief DebRA is:
What is EB?
Put simply, EB is a rare disease whereby the skin blisters and peels at the slightest touch. This is why we call our EB children the 'butterfly children'; because their skin is said to be as fragile as a butterfly's wings. Living with EB has been likened to living with third degree burns. It is very painful, and sufferers must be bandaged every day with dressings to protect and medicate their wounds.
Imagine your child living in constant pain. This is the reality for children living with EB. If you'd like to make a donation to fund research into a cure for EB, click here.
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.
Information on EBDebRA's Official Title
DebRA Australia Inc
National Dystrophic Epidermolysis Bullosa Research Association of Australia Incorporated. DebRA Australia is Nationally Incorporated
As of 2 February, 2005, we have been granted certification under the South Australian Associations Incorporation Act, 1985.
Postal Address
DebRA Australia,
PO Box 226, Pittsworth, Qld, 4356 E-mail and telephone
DebRA Australia Secretary / Coordinator - (07) 46 937 003 or mobile 0427 937 003
Other DebRA Organisation Contacts DebRA NSW - (02) 9546 5107 DebRA VIC - (03) 9759 7727 DebRA SA - (08) 7423 6284 DebRA QLD - (07) 46 937 003 |