About Us

Our Story

The Rare Disease Foundation was founded in Vancouver, British Columbia in February 2008 by a group of parents to children with a rare disease and two physicians. Disheartened by their firsthand experience of lack of support and resources for families impacted by a rare disease, they united their efforts to find clinical answers and provide concrete solutions to rare disease patients, families and their caregivers. 

Part of the problem in finding clinical answers lay in the unique nature of these rare disorders, which meant research and pre-existing treatments were unavailable. However, the main obstacles were the financial and administrative barriers to access research grants for rare diseases. As traditionally, grant funding is allocated to diseases that impact greater global populations, those affected by a rare disease were rendered invisible, with no voice and ability to be heard.  

The Rare Disease Foundation was built on the principle to be a catalyst for change through our microgrant research funding program and support services.

Mission & Vision  

We envision a society where rare disease care and treatment is accessible to all. The Rare Disease Foundation’s mission is to transform the lives of Canadians and global citizens living with a rare disease by revolutionizing awareness, developing innovative cures through our research programs, and providing resources through community and clinical support channels.

Our Values

  • Innovation

    Much like the community we serve, our ways are agile, innovative and transformative.

  • Service and Support
    We act in the spirit of serving and supporting the community in the best way we possibly can.

  • Responsiveness

    We are always ready to listen to the needs of the community, amplify the voices of those affected by rare conditions and act with purpose and dedication.