rare Disease Day- EB is everyday. A global Movement for eB
This Saturday, 28 February, landmarks around the world light up in purple for Rare Disease Day. It's a visible reminder that rare diseases deserve attention, investment, and urgency.
As we all know, Epidermolysis Bullosa is one of those conditions. Around 1,500 Australians and their families live with EB. It's called rare, but for those living with it and their families, EB is constant, every single day.
The research we fund at EBRPA not only has the potential to treat and cure EB, but provides pathways to cures for the other 6,000 rare diseases that affect over 400 million people worldwide.
As one EB Mum recently shared:
"People see a brave child. They don't see the three hours of wound care before school, or the nights when sleep just isn't possible."
Parents become wound-care experts.
Children become warriors.
Families become advocates.
EB families don't need sympathy. They need time - and research that gives it back.
Until better treatments and a cure exist, the urgency doesn't go away. Neither do we.
Matter of Time- watch, share, amplify
If you haven't watched Matter of Time on Netflix yet, Rare Disease Day week is a meaningful time to do it.
Every view builds visibility. Every share expands understanding. Every conversation helps move EB from "rare" to recognised.
We're also expecting some Australian media coverage this week - so if you see EB lighting up your feed, please help amplify it.
🔬 Big things are taking shape: Smart CRC
Behind the scenes, EBRP Australia has been quietly building something we're really excited about.
We're partnering with the Smart CRC - a government-supported program that connects researchers, biotech companies, and industry to solve complex medical problems, faster. Think of it like a dedicated task force, but for medical breakthroughs.
Australia's CRC model has helped bring world-changing technologies to life. This same model helped make the Cochlear implant a reality - taking it from a research idea to something that has transformed the lives of hundreds of thousands of people around the world.
Imagine that level of momentum behind EB.
It's early days, and there's more to share soon (Including our first project, and the research advisory group and the partners we’ll be working with). But the science is moving and we wanted you to hear it first.
Donate to accelerate research.
Thank you
On Rare Disease Day, the world turns purple. But for the 1,500 Australians living with EB, the work continues long after the lights dim.
From cold water plunges to global Town Halls. From Netflix screens to laboratory benches. Momentum is building - and it's building because of this village. Thank you for standing with families who live with EB every single day.
It’s not a matter of if.
It’s a matter of time.
With gratitude,
EB Research Partnership Australia
🌊 The Plunge is back
Melbourne - 11 April
Whether you jump in, sponsor someone brave enough to, or come along to cheer - the Plunge is a visible, joyful act of solidarity.
Funds raised help accelerate research and build the partnerships that move treatments closer to families who need them.
We'd love to see you there.
