Simone’s Story

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 [...]

2020-11-03T11:52:37+10:00November 3rd, 2020|Uncategorized|0 Comments

Hayden’s EB Story, as told by Mum Kimberley

My name is Kimberley and my son Hayden (5 years old) has EB Symplex. I had never heard of EB before my son was diagnosed but I had come across the Butterfly Children a few years ago and learnt a bit of information about it. Hayden was diagnosed just before his first birthday. He was [...]

2020-11-03T11:33:31+10:00November 3rd, 2020|Uncategorized|0 Comments

“EB Through a Brother’s Eyes” by Joel Bevilacqua

DEBRA Ambassador, Joel Bevilaqua, tells his story of EB through a brother's eyes Growing up, Matt and I were always super competitive, especially when it came to sports. Matt has never let EB stop him though and still likes to joke that he has spent his whole childhood waiting for me to catch up to [...]

2020-10-12T11:54:19+10:00October 12th, 2020|Uncategorized|0 Comments

Adelaide Research Team shares exciting Latest Research Publication

Hot off the press! The research team from Adelaide (Prof Krasimir Vasilev, Prof Allison Cowin and Dr Zlatko Kopecki) from University of South Australia are excited to share their latest research publication in the prestigious American Chemical Society journal Applied Materials and Interfaces. This research was supported by DEBRA Australia Research Grant and describes the [...]

2020-09-24T13:43:52+10:00September 24th, 2020|Uncategorized|0 Comments

We need your help more than ever right now!

As our organisation is experiencing uncertain times due to the current public health emergency, we are struggling with our ability to raise funds for our EB families and the life changing programs we deliver. We are concerned for the health of our EB families and have already heard heartbreaking stories of some of our [...]

2020-04-08T19:18:29+10:00April 8th, 2020|News|0 Comments