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 shared the same sense of urgency and values about access to resources and research for rare disease patients and their families. Today, the foundation serves a global community with research funding, resources and community programs.
Why There Is A Sense of Urgency
- 1 in 4 children who are diagnosed with a rare disease will not make it to their 5th birthday.
- 75% of rare genetic diseases affect children.
- The number of people worldwide living with a rare disease is estimated at 300 million.
- 1 in 25 children is born with a “rare” inherited disease.
- There are over 7,000 clinically defined rare diseases, of which 72% are genetic.
- In the US and Canada alone, there are approximately over 30 million people living with a rare disease.
- It takes 5 years, on average, to get to a rare disease diagnosis.
- The diagnosis journey is isolating and deeply traumatic for patients, their families and caregivers. The impact of even brief delays in diagnosis may have profound effects on outcomes; for over 40% of rare disease patients, treatment delays are precipitated by misdiagnoses.
- The process of getting a diagnosis and treatment plan is blocked by siloed and dysfunctional healthcare systems. This is due to the fact that unlike other developed countries, neither the USA or Canada have national strategies to address the growing need for research and treatments for rare diseases and conditions.
- A Holistic Approach
We connect researchers, patients and practitioners for better clinical outcomes.
- Global Reach
We network globally to attract R&D projects targeted at benefiting the rare disease community.
- Patient Driven Solutions
R&D - We put patients and caregivers in the driver's seat as decision-makers.
- Facilitate Rare Disease Research Funding
We provide seed capital quickly, collaboratively and efficiently to jump start projects and support next-level funding.
- Community Needs
We provide resources and programs to support the community outside of R&D.