Sofia has recessive dystrophic EB. Sofia’s parents have not only risen to the challenge of caring for a child with EB since the birth of Sofia, but also followed their dream of having a healthy sibling for Sofia, with the support of DEBRA Australia. Together we can help support more young families living with [...]
Thank You For Joining Us Thank you for joining us in raising awareness for Epidermolysis Bullosa (EB) during #EBAwarenessWeek2024! Your support, shares, and voices have amplified the message, bringing hope and visibility to the EB community. This week was filled with stories, insights, and the powerful connections that unite us in the journey for [...]
The inaugural Bubbles and Butterflies Ladies Luncheon has triumphantly raised over $38,000 net for DEBRA Australia programs. Hosted by DEBRA Australia ambassador and board member Deanna Pope, the event captured the vibrant spirit of the Spring Racing Carnival at Caulfield Racecourse. Attendees showcased their finest Spring Carnival fashions, with a captivating 'Fashions on the [...]
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-By Dr Albert Mellick Albert Mellick is a group leader at the Ingham Institute for Applied Medical Research, and Senior research fellow, UNSW and Associate Professor, University of Sydney. His laboratory has been funded by grants from DEBRA Australia since 2018. Dr Zlatko Kopeci (left) pictured at the EB MENA [...]
EB AWARENESS WEEK, SANDRA AND ELENA'S STORY I was born with no skin on my legs, as was my older sister. We believed it was due to a toxin that had got into mum's liver, causing the missing skin. My mum was treated with natural remedies, and when my younger brother [...]
Last Friday, our General Manager, Lise Angus had the pleasure of attending the 2023 Valenti Golf Club charity day, of which DEBRA Australia was the beneficiary. Incredibly, the club raised a HUGE $11,500 for our EB community this year. We are so grateful to have the support of Valenti [...]
Some of Australia's best comics came together in Melbourne over the June Long Weekend to raise money for our EB community. More than 300 people attended the Long Weekend Laughs event, where comedians like Cal Wilson, Dilruk Jayasinha performed alongside our incredible host and organiser Daniel Connell. Our bellies [...]
We have received the news from DEBRA International of the FDA approval of a new treatment for dystrophic epidermolysis bullosa (DEB). The treatment, known as VYJUVEK™, is a topical gel which must be administered by a healthcare professional. While this is great news for the DEB community, we are still unsure when this treatment will [...]
