What is Venture Philanthropy?
Every dollar works more than once
Most charities spend a donation once. EB Research Partnership Australia invests it - and when the research we back succeeds, value flows back to fund the next breakthrough. This is venture philanthropy: the engine behind the fastest progress in EB research history, now working in Australia.
How the model works
1. We invest, not just grant
Our Global Scientific Advisory Board identifies and rigorously vets the most promising EB research. When we fund a project, our agreements retain a share of future value if the therapy succeeds commercially.
2. Success pays it forward
When a funded therapy reaches the market, returns flow back - not to shareholders, but into the next round of research.
3. The flywheel spins faster
Every success compounds. Your donation doesn't just fund one project; it seeds a self-sustaining pipeline of treatments and, ultimately, a cure.
Think of it as a managed fund where the return is measured in treatments — and every distribution is reinvested.
The model is proven
In 2023, Vyjuvek became the first-ever approved treatment for EB — developed with funding from our global partner, EB Research Partnership (EBRP), through this exact model. Two more approved treatments have followed. For Australian families, this progress is no longer abstract: these therapies are beginning to reach Australian patients.
EBRP's venture philanthropy model has been recognised by Harvard Business School, Yale University, and MIT — not only for accelerating EB research, but as a blueprint for the 7,000+ rare diseases still waiting for their first treatment.
The Australian multiplier
Here, the model has an added gear: co-investment. Our foundation partnership in the SMART Cooperative Research Centre turns a $200,000 EBRPA investment into more than $400,000 of EB research annually — matched by government and research partners.
Australian donors don't just fund research. They unlock it.
Go deeper
Venture Into Cures — our global partner EBRP's methodology overview (PDF, EBRP global)
Global Genes case study — an independent look at the EBRP model (PDF, EBRP global)
Ready to put your giving to work?
If you're a donor, family office, or foundation trustee who wants to see philanthropy perform, we'd welcome a conversation.
Start a conversation → Invest in a cure →FDA's Approval of Vyjuvek
The FDA's approval of Vyjuvek, the first-ever approved EB treatment, marks a milestone in EBRP’s mission to discover treatments and a cure for EB. It provides validation for our scalable and sustainable Venture Philanthropy business model and most importantly creates hope for families around the world battling EB every day.
EBRP’s Venture Philanthropy business model has been highlighted for its leadership by Harvard Business School, Yale University, and MIT in helping to fast-track not only a cure for EB but therapies that could affect thousands of other rare diseases.
Learn More
To realize our vision of a world without EB, we're building a model based on three core pillars: Share, Collaborate, Cure. Learn more about our Venture Into Cures methodology to accelerate the path to EB therapies. Read more
Global Genes covers our model from Venture Philanthopy, to strategic partnerships, and our vision for a first-of-its kind data platform to advance treatments and cures for EB in this case study. Read more.