DEBRA Australia

DEBRA Australia is the only national charity dedicated to supporting Australians living with Epidermolysis Bullosa (EB)—a rare, genetic, often life-threatening, and extremely painful skin condition described as living with constant third-degree burns. For children and adults with EB, everyday activities can cause severe pain, wounds, and infection. For families, EB brings relentless medical care, emotional strain, and profound isolation.

With no recurrent government funding, DEBRA delivers vital, practical support through:
– Family Camps that bring EB families from across Australia together for connection, education, and emotional relief
– Parent and Family Respite Breaks that provide mums, dads, and carers with essential time to rest, recover, and learn after years of intensive caregiving
– Specialist EB Nurse services that deliver expert, life-changing care from the first hours of a baby’s life, supporting families in hospital and at home, and reducing preventable complications and hospitalisations
– Health Professional education and National EB Conference that improves early diagnosis and best-practice EB care nationwide, ensuring families receive equitable, high-quality treatment regardless of where they live
– EB Research Grants that advance treatment options, symptom relief and long-term hope for a cure
– EB Awareness Week, which increases national understanding of this rare condition and helps unlock broader community and policy support for families living with EB.

DEBRA’s impact is national. Families attend programs from across Australia, supported by partnerships with major hospitals, specialist clinicians, and EB nurses. Evaluation consistently shows improved wellbeing, reduced isolation, increased confidence, and stronger family resilience.

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