During December we asked you to helped DEBRA Australia light up the tree and give hope to EB Families across Australia. With your amazing support we were able to raise over $3,145! Your donations ensure that we can continue to reach out to all individuals living with ‘the worst disease you’ve never heard of Epidermolysis [...]
Recently in April, EB Mum and DEBRA Australia Board Member Mel used her recent holiday to Bail to also help support some of the families living in Bali impacted by EB by delivering some much needed bandages. Mel was kind enough to share her story with us: On Tuesday 3rd April we were picked up by [...]
Last Friday night at the Kooyong Tennis Club in Melbourne, the cheque presentation for the Melbourne Market Charity Golf was held. An amazing $82,000 was raised from the event which we are incredibly grateful for. The money raised will go towards all our support services and help make a difference in the lives of those [...]
From Kidspot.com.au. Lylah's condition is almost equivalent to having third-degree burns, her parents share what life is like with their special little girl. Little Lylah's journey into the world wasn't as simple as other babies. Her parents Lara and Mathew Scott got married back in 2015 but struggled to conceive. "We had to go through IVF to conceive Lylah," [...]
Thank you so much to the Brighter Days crew and all the amazing supporters who attended. The 2018 event was a fantastic success and we can’t wait to share more information with you.
The EB2017 and EB-CLINET conferences were held at the same venue in Salzburg, from 24 - 27 September 2017. They were run as two conferences with one shared day of the programme. Together, the two conferences provided an update on EB research and its translation to clinical benefit for patients - 'from lab-bench to bedside'. [...]
A huge congratulations to DEBRA Australia Ambassador Matt Bevilacqua on becoming the 2018 Nutri-Grain Ironman Series champion. After competing in the series for 5 years Matt was able to take out first place in the 6-round event in North Cronulla and has been crowned as the first Tasmanian to win the Ironman championship. Matt has [...]
For babies born with EB, childbirth was excruciating and traumatic the friction can rub, causing them to appear as if they have been born without skin. This article from News.com.au covers the Clinical trials that are currently happening in Australia and around the world.
Its happening again! The Brighter Days Festival in Bright Victoria over the Labour Day long weekend 9-11th March. Head down for a weekend of live music and events or buy a ticket in their mega raffle. For more info click here.
Dear EB Health Professionals, Please note in your diaries that DEBRA’s next Family Camp and Health Professional Education sessions will be held in Sydney at the Novotel Brighton le Sands from Friday 31 August to Sunday 2 September 2018. The tentative programme is: Friday am: Arrival and time available for ANZEB nurses group to meet [...]