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 [...]
The Australasian College of Dermatology 51st Annual Scientific Meeting is being held in May, 2018 at the Gold Coast Convention and Exhibition Centre in Queensland. Details are as follows: Event: Australasian College of Dermatology 51st Annual Scientific Meeting Dates: 19 – 22 May 2018 Venue: Gold Coast Convention and Exhibition Centre, QLD Website: www.acdasm.com Contact [...]
An international team of researchers has broken new ground with a pioneering skin grafting procedure, reconstructing a fully functional outer skin – or epidermis – for a child suffering from a severe, and often fatal, form of Epidermolysis Bullosa (EB) – a genetic skin condition that causes constant pain due to unstoppable internal and external [...]
BravE Butterfly Gala 2017 Recap Thank you for your generosity in supporting our inaugural BravE Butterfly Gala 2017. Your donation and support has helped DEBRA Australia raise over $160,000 to ensure we can keep delivering our vital programs in the EB community. The night kicked off with guest performers from Inspire [...]
DEBRA Australia supporter Future Generation Investment Company is pleased to announce its semi-annual Shareholder Presentations and Investment Forum, held in November this year. The Investment Forum will be held in Melbourne on the 30th of November at the Melbourne Convention and Exhibition Centre. The Shareholder Presentations will be held in many locations throughout Australia. For all the [...]
What amazing determination and courage Andrew Biszczak has shown running from Victor Harbor in South Australia to Brisbane over a 4 month period raising over $142,000 (net surplus) for DEBRA. Andrew’s wife Sonia and daughter Tiffany were part of the support crew who helped make it all happen along with a dedicated committee behind the [...]
The Family Support committee has been busy over the past few months attending EB clinics and supporting families around the country with essential EB related items. Nina from Melbourne and Tara from Adelaide are two of the many applicants we have recently supported. Tara has written a lovely thank you letter expressing how much the [...]
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public [...]