News

DEBRA Australia supporting EB Community in Vietnam

On November 21, 2018 our Family Support Co-ordinator Simone Baird and 3 other volunteers from Perth and Melbourne visited Hai Phong, Vietnam to work with a charity group known as Niem Tin and the EB community.  Representing DEBRA International and the EB Without Borders program was an absolute honour and an amazing experience which will [...]

2019-01-15T20:15:11+00:00January 15th, 2019|News|0 Comments

Zoe selected as 2018 Follow Your Dreams Recipient

Congratulations to Zoe Hanvey who was selected at the Follow Your Dreams Recipient for 2018. Here is Zoe's story told by her father David: Earlier this year, Zoe made a wish (without our knowledge !) to DEBRA.  Her wish was to be able to go on a waterslide, where she would feel safe due to [...]

2019-01-15T20:04:35+00:00January 15th, 2019|News|0 Comments

Thank You FGX

DEBRA Australia is very excited and proud to announce that through the Future Generation partnership we have been awarded $193,422 to support DEBRA and our EB Nurse programs. This has all been done through philanthropic investment vehicles that create wealth for shareholders and support Australia's future generation through charitable donations. By providing their services pro [...]

2019-01-06T23:14:44+00:00January 6th, 2019|News|0 Comments

Christmas Appeal 2018 Thank You

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 [...]

2019-01-06T23:15:41+00:00January 6th, 2019|News|0 Comments

Melbourne Market Golf Day 2018 Cheque Presentation

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 [...]

2018-04-16T20:21:52+00:00April 16th, 2018|News|0 Comments

‘Our baby’s skin tears like paper’

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," [...]

2018-03-22T21:01:35+00:00March 22nd, 2018|News|0 Comments

International Research and EB-CLINET Conferences 2017

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'. [...]

2018-03-10T13:01:44+00:00March 10th, 2018|News|0 Comments

DEBRA Ambassador Matt Bevilacqua wins 2018 Nutri-Grain Ironman Series

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 [...]

2018-03-10T12:28:27+00:00March 10th, 2018|News|0 Comments