How We Work
Disrupt with high tech and low overhead costs.
We believe in prioritizing our community’s needs by spending funds on initiatives to empower our community to collaborate and problem solve.
Our core team spread across Canada and the US work remotely keeping overhead costs low so that we can maximize the reach of our programs rather than maintain an impressive physical office.
Our soon to be launched mobile app, Rare Finds will be accessible to Android and iOS users and will enable patients, their families, researchers, and practitioners to easily connect via text, video chat or in the community forums while also providing access to rare disease research.
Boldly connect patients, researchers and practitioners for better results all around.
Aside from our mobile app, Rare Finds, we have harnessed our desire to break down communication silos between patients, practitioners and researchers into a translational care approach to research to ensure a patient-centric treatment that incorporates all relevant data sources.
Find cures where others are baffled, and roadblocked.
To date, our Microgrant Program and translational approach to research have resulted in 14 potential cures to rare diseases such as Infantile Hemangiomas, Serotonin-deficient Syndrome, Refractory Marcus Gunn Jaw-Winking Syndrome, and an extremely rare bone marrow failure syndrome, just to name a few.
Read summaries of previously funded projects.
Seed-fund ($5K or less) early stage research and product development projects, designed to benefit rare disease patients and caregivers.
By jump-starting early stage research through a microgrant and empowering research champions in our translational care approach to research, we aim to reduce the traditional lengthy cycle of disease identification, research, and drug trial process. This innovative model can improve the lives of patients with rare diseases in as little as 18 months to three years. To date, researchers of 25% of microgrants awarded have gone on to receive $8.6M in bridge funding to expand their work.
Report back results seamlessly
Rare Disease Foundation provides several communication avenues for researchers to share results with us and the community. Upon project completion, a lay summary report is first sent to our Research Director. However, the report is also uploaded to our searchable research database within the app to share with the community.
The Rare Disease Foundation team upholds its responsibilities towards all its funders in providing updates on research grants through Impact Reports or informal status checks.
Power-up researchers with low red tape so they retain full control over their team, process, and IP.
We believe in empowering researchers by providing them with the financial means to jump-start their discovery journey. All we ask of them is to provide us with a lay summary of results upon completion and to acknowledge the support of Rare Disease Foundation and BC Children’s Hospital Foundation (BCCHF) in any publications containing data supported by their microgrant work.
Support pre-seed and A series funding for especially impactful R&D projects
While the Microgrant Program is the backbone of our research initiative, we have been known to support R & D projects outside of the program that we think may have a far-reaching impact on the rare disease population. A recent example is Dr. Bruce Carleton’s upcoming research project on COVID vaccine safety in children.
We try to stay humble, but it’s hard when you’re this good!