About Us

Our Why

The Rare Disease Foundation (RDF) was founded in Vancouver, British Columbia in February 2008.  RDF was launched by rare disease patients, caregivers, researchers and practitioners, who share the same sense of urgency and values about research and resources for rare disease patients and their families. Today, the foundation serves a global community with research funding, resources and community programs. 

Sense of Urgency

  1. 1 in 4 children who are diagnosed with a rare disease will not make it to their 5th birthday
  2. 75% of rare genetic diseases affect children
  3. The average rare disease identification, research, and drug trial process traditionally takes 44 years
  4. The number of people worldwide living with a rare disease is estimated at 300 million
  5. 1 in 25 children is born with a “rare” inherited disease
  6. There are over 7,000 clinically defined rare diseases, of which 72% are genetic
  7. In the US and Canada alone, there are approximately over 30 million people living with  a rare diseases 

Our Values

  • Connect researchers, patients, and practitioners for better clinical outcomes 
  • Network globally to attract R&D projects, targeted at benefiting the rare disease community 
  • R&D - Put patients and caregivers in the driver's seat as decision-makers
  • Funding - Provide seed capital, quickly, collaboratively, and efficiently
  • Report results transparently, and support next-level funding 
  • Provide resources, and programs to support the community