TEE OFF 4 EB 2021 - Wrap Up Our 2021 Tee off For EB golf event raised just over $15,000 for DEBRA Australia and our life changing programs! The day started off at lunchtime, with all our players hitting the course in perfect Sydney weather! Throughout the day, our players competed in a range of novelty events [...]
The DEBRA Australia Professional Counselling Program is here to support the patients, families and carers as they manage life with EB. Experiencing a diagnosis of EB can be very distressing and many will benefit from professional support to help manage the challenges living with EB presents in everyday life. Clinical Psychologists can work with you [...]
The 2021 Tee off 4 EB Golf Day is FAST approaching, to be held Fri 28th May at Mona Vale Golf Course! Check out the video below to get a taste of what will be on offer throughout the Golf Day & Dinner. To register your team, or to purchase tickets to the [...]
We have already had significant interest in Tee off for EB 2021. Get in QUICKLY to secure your team for this highly anticipated event. It is set to be a fun filled day at Mona Vale golf course, featuring: Novelty golfing competitions throughout the afternoon A sumptuous 2 Course dinner - Click here to buy dinner [...]
Chris O’Brien who is the Chair of The Quilters’ Guild of South Australia, met an EB family 10 years ago and was determined to make a quilt to raise funds for DEBRA Australia. Some years later with a collaborative approach, the beautiful quilt came to fruition and was named Paws for a Cause. It included [...]
With My EB I..... Click here to watch this short video, showcasing the strength, resilience and talents of our wonderful EB individuals....
“You know how at airports and places like that, people slap a big, bright orange sticker on things like paintings and sculptures, and in bold white or black letters are the words ‘Handle with care’. Or when you’re shopping in the homewares section of a store and on the bottom of the wine glasses box [...]
For me, the worst thing about EB is not the condition itself, it is probably the fact that it is genetic. Sure, when you are a youngster suffering with it, it can be horrible, really horrible. My memories of growing up with EB are a bit vague though. The first time I realised that I [...]
As National Family Support Coordinator I frequently observe the strength and determination it takes to live with ‘the worst disease you’ve never heard of’. To say caring for individuals living with EB takes a lot of courage and hard work is an understatement. It’s relentless, gruelling and takes nothing but sheer grit and dedication to [...]
In honour of EB Awareness week, I wanted to share my story living with the condition. I was diagnosed with Epidermolysis Bullosa Simplex (Dowling Mera). Simplex is the term they use to for the mild subtype of EB, and Dowling Mera is the term they use for the most sever form of Simplex. When I [...]
