Rare500
Rare500 is a community-driven digital health initiative designed to connect rare disease communities, knowledge and relevant stakeholders in a privacy-first environment.
The unmet need
Rare disease communities are often the first to experience gaps in healthcare systems, yet their collective knowledge is fragmented, invisible and hard to act on. Most systems are designed for common conditions.
The current concept
A privacy-first community registry and knowledge space, where patients, caregivers, students, clinicians and researchers can come together around real needs, shared experiences and aggregated insights.
Design pillars
Privacy
Aggregated, k-anonymous public views. No names, initials, exact ages or disease-level identifiers displayed.
Trust
Consent-driven data collection, clear governance and community involvement in design decisions.
Community participation
Built with rare disease communities and organizations — not designed in isolation.
Aggregated insights
Turning lived experience into structured signals that can inform research, innovation and policy.
Responsible stakeholder collaboration
Access for researchers and stakeholders under strict guardrails and a clear ethical framework.
Status
Rare500 is currently a pilot-stage initiative. The Innorare corporate website does not collect health data. Any future data collection will happen inside the dedicated Rare500 environment under its own privacy framework.
Rare500 does not provide medical advice, diagnosis or treatment. It is a community and knowledge platform, not a clinical service.