Article written by A/Prof Albert Mellick As a scientist based in Australian academia over the last 20 years I am well aware of the challenges and limitations of relying solely on government funded research. Despite the many breakthroughs that have come in the long history of science by studying rare diseases it is often the [...]
Are you getting bored and struggling to fill the time whilst having to stay at home? The EB Family Support team has searched all over to bring you a list of great resources to help you and your family learn a new skill, continue with your hobbies or even stay connected with others. There’s [...]
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 [...]
Dear Friends, During these difficult times, we wanted to touch base with you all, as we manage the uncertainty of COVID-19 (Coronavirus) within our community, our country and the world. We appreciate that this is a very concerning time with the rapidly evolving situation occurring with respect to COVID-19 (Coronovirus). As with other similar charity [...]
The countdown has begun for the 13th edition of Rare Disease Day! Rare Disease Day is on the 29 of February 2020, the rarest day of the year. The campaign is open to everyone to get involved to raise awareness for people living with a rare disease all over the world! Thousands of Rare [...]
Mark & Di Robinson distribute fruit and vegetables from the Melbourne Market Authority to the whole of Victoria. Over 100 people gathered to help celebrate their success. Mark and Di are strong supporters of the Melbourne Market Golf day and promised to display the DEBRA logo on their next new semi-trailer which was unveiled on [...]
A message from the President of the Brighter Days Foundation A MESSAGE FROM THE PRESIDENT Hi everyone, On behalf of the Brighter Days Committee I’d like to share some news about Brighter Days 2020. Thanks to your amazing support the festival has continued to grow each year. It was obvious to everyone who attended last [...]
Congratulations to Dean Clifford who has been inducted into Disability Employment Australia's Hall of Fame. From the Disability Employment Australia website: Disability Employment Australia has enjoyed a long-standing relationship with Dean, and one of his first speaking opportunities was at a DEA (then known as ACE) conference back in 2004. Dean’s presentation received a standing [...]
The Board of DEBRA Australia is delighted to announce that Lise Angus has been appointed to the newly created role of General Manager. Lise brings a strong background in the corporate and not-for-profit sectors, with expertise in team development, formulating and developing organisational strategies, relationship management, marketing and fundraising. She has spent several years with [...]
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 [...]
