Rare As One Project

Rare disease is anything but rare. As many as 7,000 rare diseases affect 400 million people globally. The vast majority are not well understood, and less than 5% have approved treatments. Yet worldwide, patients are meeting these challenges head on. The Rare As One Project is committed to uniting these communities in their quest for cures.

Our Approach

Patients are experts in their disease area and their knowledge has the power to dramatically accelerate the pace of research. We work to support them by offering new tools, grants programs, and capacity-building support and training.

Strengthen Community

Rare disease patients around the world are building powerful communities and research networks. Our goal is to elevate and strengthen these communities and connect them with one another.

Build Capacity

Patient communities are the agents and architects of their own change. We aim to lift up rare disease communities, providing them with resources and tools to be more effective advocates for, and partners in, research.

Promote Collaboration

Collaboration is key to accelerating progress against disease. That’s why we’re working to bridge learnings within and across diseases, and among patients, researchers, clinicians, and other key community members.


Funding Opportunity

Apply to join the Rare As One Network

We’re inviting patient-led 501(c)(3) organizations to apply for a two-year funding opportunity to develop and launch collaborative research networks in partnership with clinicians and scientists. The program will provide support in the form of funding, tools, and capacity-building support and training.