Current EB Trials In Australia

Current EB Trials In Australia The following clinical trials are currently enrolling individuals with EB in Australia. Anyone who is interested is encouraged to contact one of the study centres to obtain more information about the trial. EASE Phase 3 Clinical Trial for Oleogel-S10 in EB Patient subtype: any subtype of inherited Epidermolysis bullosa. Size: [...]

2017-06-08T21:03:34+00:00 June 8th, 2017|Research|0 Comments

What is a clinical trial and why should patients with Epidermolysis Bullosa consider getting involved with them?

What is a clinical trial and why should patients with Epidermolysis Bullosa consider getting involved with them? For the first time in history, sponsored clinical trials have arrived in EB. You may have heard of trials before taking place in EB but these have been investigator-initiated studies, usually with only a few patients. These are [...]

2017-06-08T21:08:51+00:00 June 8th, 2017|Research|0 Comments

Rare Disease Day 2017

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 [...]

2017-05-01T00:55:14+00:00 January 29th, 2017|Events|0 Comments

Whats On In 2017

DEBRA Australia has big plans in 2017. Here are just some of the major events that are happening this year, that we're excited for. Tough Tilly Day 7th January 2017 You can still grab your tickets and head away for a great weekend raising Awareness and funds for Epidermolysis Bullosa (EB). With some Australian music [...]

2017-05-01T00:55:16+00:00 January 6th, 2017|Events|1 Comment

Whats On: Tough Tilly Day 2017

Who's coming to Tough Tilly Day on Saturday 7th January? Raising Awareness and funds for Epidermolysis Bullosa (EB). With some Australian music legends lined up to entertain, we invite you to bring your picnic rug and chairs and come along to support the fight against EB with 50% of all funds raised going to DEBRA [...]

2017-05-01T00:55:16+00:00 December 22nd, 2016|Tough Tilly Day|0 Comments

Family Support Update August 2016

The DEBRA Family Support Committee and EB Nurse in Melbourne have been extremely busy over the past 3 months supporting 2 new families who have recently become part of the EB community. Welcome gorgeous Gabriel and Charlotte along with parents Martina, Jess and Shane. Gabriel is 12 weeks old, Charlotte is 6 weeks old and [...]

2017-05-01T00:55:16+00:00 August 16th, 2016|Family Support|1 Comment

Research and Education June 2016

DEBRA Australia Travel Grant Recipient Emma Kim Emma Kim was awarded a travel grant by DEBRA Australia to attend the 49th Australian College of Dermatologists Annual Scientific Meeting (ACD ASM 2016) held in Perth from 14th to 17th of May. Emma is a 5th year medical student studying at the University of New South Wales. [...]

2017-05-01T00:55:16+00:00 June 25th, 2016|Research and Education|0 Comments

Community Support June 2016

EBCC Mate's Ride raises $10,000! In March some of the riders from previous EB Cross Country events got together and made their way from the Hunter Valley to the Brighter Days Festival held in Bright, Victoria. Along the way these amazing individuals donated $10,000 to DEBRA Australia. Thank you so much so all of the team [...]

2017-05-01T00:55:16+00:00 June 25th, 2016|Community Support|0 Comments

The Million Dollar Run Quiz Night – A Huge Success!

A sensational 175 People crammed into the Victor Harbor Recreation Centre for The Million Dollar Run Quiz Night on the 27th May to help raise much needed funds for the Butterfly Children around Australia…as a result $5,000 was generated last Friday towards Andrew Biszczak’s minimum goal to raise $1,000,000 in ‘The Million Dollar Run’ for [...]

2017-05-01T00:55:16+00:00 June 25th, 2016|The Million Dollar Run|0 Comments