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Rare Disease Preview Campaign

Rare Disease Preview Campaign

We Have an Innovative Approach

The Rare Disease Foundation is focussed on linking basic science and clinical practice to increase the efficiency of rare disease research. This model is called Translational Care. This model drives patient based, treatment focussed research projects from disease characterization to treatment with greater efficiency. By incorporating research, astute clinician observation and parental knowledge into the various stages of rare disease research we impact the speed of discovery and the way rare conditions are managed.

Mission

Researchers, caregivers, volunteers and families working together to find solutions for children and families affected by rare and undiagnosed diseases

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.


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Rare Disease Preview Campaign Play Video

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...