Exploratory research into rare cancers has been flagged as a national priority. This focus highlights the potential for Australia to lead not just in medical discovery, but in compassionate, community-informed innovation.
For startups, this creates a space for co-design: building patient registries, diagnostic pathways, and digital health solutions that empower users while feeding future research.
Why health entrepreneurs should look to the edges
Rare disease communities, survivors of low-survival cancers, and patients in rural Australia are often seen as too small or complex to build for. But these outliers can become a catalyst for innovation.
These 1% cases expose the friction points in diagnostics, continuity of care and data infrastructure. And when you solve for them, you often create breakthroughs that ripple across the entire health system.
What we’re learning from rare cancer research
Australia’s Medical Research Future Fund (MRFF) has invested nearly $38 million into rare cancer research since 2015. In 2024, it launched the Low Survival Cancers Mission, a 10-year initiative focused on cancers with a five-year survival rate below 50%.
A 2022 Delphi study identified research into rare cancer types and their biology as critical priorities. The goal isn’t just to understand these conditions better — it’s to use them as a launchpad for broader therapeutic innovation.
This is fertile ground for collaboration between research institutions, digital health startups, and medtech founders.
The patient perspective: beyond the pitch deck
Australians with rare diseases often endure what’s known as a “diagnostic odyssey”, as a result of which:
- 66.2% saw more than 3 doctors to reach a diagnosis
- 45.9% had received at least 1 incorrect diagnosis
- 30% wait 5+ years for a diagnosis.
Once diagnosed with a rare condition, they may not be fully informed:
- 79.7% did not know of a patient registry for their condition
- 75.2% were not informed of clinical trial opportunities.
Such statistics represent years of uncertainty, financial stress and missed opportunities for intervention. Entrepreneurs who listen deeply to these experiences will be better equipped to create genuinely useful solutions.
A case for regional-first innovation
A 2025 BMC Cancer study revealed that patients with rare cancers in rural and remote areas face compounded challenges, including:
- Higher mortality rates
- Limited access to peer support
- Elevated psychological distress.
Yet these communities are also testing grounds for scalable solutions. Think remote-first diagnostic pathways, adaptive telehealth models or peer-to-peer platforms that centre lived experience.
Designing with rural patients in mind can help improve health equity from day one.
What health entrepreneurs can do now
| Strategy | Action |
| Get inside the research loop | Partner with initiatives like MRFF and Rare Voices Australia to gain early-stage insights. |
| Solve for one, scale to many | Design with rare or rural patients in mind then broaden your application. |
| Build beyond silos | Co-create with clinicians, researchers, policy experts, and lived experience advocates. |
| Validate early | Don’t wait for perfect trials — develop your health economic and regulatory frameworks in parallel. |
| Advocate for better data | Push for interoperable, secure registry infrastructure that serves researchers, clinicians, and patients alike. |
Innovation with empathy
Solving for rare conditions isn’t a niche strategy. It’s a model for ethical, human-centred and future-focused health innovation.
These patients aren’t passive recipients of care. Their long, frustrating, worrisome journey has made them experts by experience, ready to help co-design a better system.
For innovative healthcare entrepreneurs, this is both a commercial opportunity and a chance to build something that truly matters.
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