Rare Disease Demo Campaign
What is a Rare Disease? How Many Canadians Have a Rare Disease?
A rare disease is defined as a condition affecting fewer than 1 in 2000 people. There are more than 7000 diagnosed rare diseases and many more undiagnosed diseases. About 1 in 12 people (nearly three million Canadians) have a rare disease. Most known rare disorders are severe and chronic, with many being degenerative and life threatening. Rare diseases are poorly characterized so many conditions remain unamed. People who do not have a specific diagnosis can be denied access to necessary medical support services.
What We Do
As part of our Research Focused Initiatives, the foundation has developed a Microgrant Program that kick starts research on patient focused projects for rare, under-studied diseases. As a compliment to research activities, the organization developed Parent Support Initiatives to foster the organization and empowerment of the rare disease community. The Parent2Parent Resource Network is a group of local forums for cross-disease information sharing and social support. The group provides a means of organizing families for mutual support, mentoring and knowledge sharing regardless of their diagnosis. The community can then undertake educational outreach and advocacy issues relevant to a wide spectrum of rare diseases.
Why Traditional Research Grants are Limited in Effectiveness for Rare Disease Research
Financial and administrative barriers deter physicians, clinician scientists and scientists from submitting funding requests for small patient markets. By definition rare diseases mean there are very few subjects and sadly those subjects often die before further characterization of the disease or condition can be centralized for research purposes. Standardized drug trials require a certain number of subjects for a specified length of time.
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About this campaign
The Vancouver research director for the rare disease foundation claims that nearly 3 million Canadians will have a rare condition surface within their lifetime. Leah Bolton pays a special visit to a little boy named Jaxton...