Rare Ventures: what it means for EB - and for Australia
A bigger engine for the same destination.
Our global partner, EB Research Partnership, has launched Rare Ventures - a first-of-its-kind venture philanthropy platform bringing EBRP together with Stanford Medicine, UPMC Children's Hospital of Pittsburgh, UPMC Vision Institute, Carnegie Mellon University and ElevateBio.
It is one engine combining artificial intelligence, clinical research, therapeutic development, manufacturing and commercialisation. EB sits at the centre of it.
Here in Australia, nothing about our work changes.
EB Research Partnership Australia remains an independent Australian charity, funding EB research, and expanding Australia's role in the global EB research ecosystem. Our Smart CRC partnership continues. Our commitment to the Australian EB community continues. Our model - deploying philanthropic capital to attract co-investment from industry and government - is exactly the model Rare Ventures is built on, now running at greater scale.
What does change is the weight behind the science. More expertise. More capital. More infrastructure built specifically to move promising research faster. When Australian EB research feeds into a global engine of this size, it moves further and faster than it could alone.
More eyes on EB. More money on EB. That is unambiguously good news.
What you might be wondering:
Is EBRP moving away from EB?
No. EB remains the leading focus. Rare Ventures brings new supporters, partners, infrastructure and speed to the same mission - treatments and a cure for EB.
Does this change EB Research Partnership Australia?
No. EBRPA is an independent Australian charity governed by an Australian board. We fund research here, we partner here, and our strategy is unchanged. What changes is the global infrastructure our work now connects into.
Why is Rare Ventures working on other rare diseases?
Rare diseases share the same barriers - small patient populations, fragmented data, limited specialists, and development timelines measured in decades. A breakthrough in how those barriers are solved for one condition helps solve them for EB too. Progress isn't zero-sum. It compounds.
Is EB funding being redirected?
No. The Richard King Mellon Foundation has committed up to US$25 million to support Rare Ventures, with the majority of that funding directly benefiting the EB community. This is new money coming into the fight.
What happens to research already underway?
It continues - and now moves through a system designed to get it to people faster.
Does this affect Australian donors or Australian projects?
Not at all. Australian donations continue to fund global research priorities through EBRPA. What Rare Ventures adds is a much larger global network that Australian science can plug into.
Where can I learn more?
Visit rareventures.org, or get in touch with us directly with any questions: simone@ebresearch.org.