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 12 people will have a “rare” condition in their lifetime.
- There are over 8,000 clinically defined rare diseases, of which 80% are genetic.
- It takes 5 years, on average, to get to a rare disease diagnosis.
- The diagnosis journey is isolating and deeply traumatic for people, their families and their caregivers. The impact of even brief delays in diagnosis may have profound effects on outcomes; for over 40% of people with rare disease, 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 nor Canada have national strategies to address the growing need for research and treatments for rare diseases and conditions.
- Research is only happening in 1,000 of the more than 8,000 rare diseases and progress is slow due to the siloed nature of research expertise.
OUR VALUES
- A Holistic Approach
We connect researchers, patients and practitioners to create better 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 organize and support the rare community