by FIlmInk Staff
A powerful new Netflix documentary, Matter of Time, is bringing worldwide attention to Epidermolysis Bullosa (EB) – a rare, devastating genetic condition affecting approximately 1,500 Australians and their families.
Premiering globally on Netflix on 9 February, Matter of Time follows the urgent international race to cure EB, a group of incurable genetic skin disorders that cause the skin to blister and tear at the slightest touch. Often referred to as “butterfly skin”, EB is one of the most painful and complex rare diseases, with no cure and limited treatment options.
The documentary centres on a benefit concert hosted by Pearl Jam frontman Eddie Vedder, who co-founded EB Research Partnership (EBRP) with his wife Jill Vedder in 2010, after EB affected the child of Jill’s childhood friend. The film weaves together the concert – recorded at Seattle’s iconic Benaroya Hall – with deeply personal stories from patients, families, researchers and clinicians working to change the future of EB.
In October 2023, Vedder performed two sold-out solo shows at Benaroya Hall, with all proceeds directed towards critical EB research. Matter of Time interlaces these performances with the inaugural Venture Into Cures Summit, where researchers and people living with EB gathered to share breakthroughs, lived experiences and urgency for change.
The film premiered at the Tribeca Film Festival in 2025 and has since screened at international festivals including the Nashville Film Festival, where it won Best Feature Music Documentary, and the San Diego International Film Festival, where it received Best Picture.
For Australian families living with EB, the Netflix release represents far more than a documentary premiere.
“This film reflects the daily reality for Australian families – relentless pain, hours of wound care, repeated hospital stays, and the emotional toll of caring for a child with a life-limiting condition,” said Michael Hund, CEO of EB Research Partnership, based in New York. “But it also captures something new: genuine momentum. For the first time, EB is being seen, heard and taken seriously on a global stage.”
After a 40-plus city theatrical run and years of behind-the-scenes work, Matter of Time will now be available to audiences across the globe – including here in Australia.
Honest, confronting and hopeful, the film captures the reality of EB with heart, while telling a broader story about urgency, innovation and collective action – driven forward with unmistakable rock-and-roll energy.
For families living with EB, this isn’t just a release date. It’s a moment many have been waiting for.
In Australia, EB affects around 1,500 people nationwide, with families in every state. Many children require multiple hours of wound care each day and live with constant pain and risk of infection. Parents often become full-time carers, navigating complex medical systems while advocating for research in a condition that has historically been underfunded due to its rarity.
The documentary arrives at a critical time for Australian research. EB Research Australia is actively supporting world-leading work through the University of South Australia and the SMART Cooperative Research Centre (SMART CRC), where Australian scientists are pioneering regenerative medicine and advanced biomanufacturing approaches with the potential to transform EB treatment – and unlock breakthroughs for other rare diseases.
“This is not just a story about awareness,” Mr Hund said. “It’s about translating awareness into action – accelerating research, attracting investment, and ensuring Australia remains at the forefront of global efforts to cure EB.”
The film’s impact is deeply personal for Nathan Burmeister, Australian Board Chair of EB Research Australia, and father of a 3-year-old son living with severe EB.
“As a parent, EB never stops – there’s no break from the pain or the worry,” Mr Burmeister said. “Seeing EB represented on a platform like Netflix is incredibly powerful. It validates what our children endure and gives families hope that meaningful change is finally within reach.”
Matter of Time also resonates strongly with Australian sporting legend Jonathan Brown, AFL great and Board member of EB Research Australia, who has a close personal connection to EB through a family friend living with the condition.
Families living with EB across multiple Australian states are available to speak with media about the impact of the film and what increased awareness could mean for research, care and community support.
“With visibility comes urgency,” Mr Hund said. “And urgency is exactly what families living with EB need.”
