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VISION: Transforming the world of rare disease care
THE PROBLEM: Nearly 3 million Canadians are living with a rare disease, and many more are living without a diagnosis. Health care and social support services are designed for patients with common diseases. Parents don’t know where to turn when faced with a diagnosis of a rare or unique condition. For patients with rare or undiagnosed diseases, research is care. Unfortunately, traditional research grants are limited in effectiveness for rare disease research. Furthermore, health care agencies don’t fund research and research agencies don’t fund health care.
OUR INNOVATIVE APPROACH:
Through our Translational Care Model we aim to deliver effective and transformative options to those living with rare and/or undiagnosed diseases. The Rare Disease Foundation microgrant program helps to fill the funding gaps by providing a small amount of funding ($3500) to inspired clinicians and scientists for their patient-focused projects. Our goal is to support research that can directly impact the care and quality of life of a child with a rare disease.
The Rare Disease Foundation also helps families at a day-to-day level through our Parent-2-Parent Resource Network and online community. Our parents have discovered that they have much to offer each other, regardless of diagnosis. The focus of our community is support, mentorship, networking, and education.
YOUR PARTICIPATION CAN HELP. Vote for us. Hope should not be as rare as the conditions we treat…
Join our online community to learn more about our microgrant program, research philosophy, parent 2 parent resource network, volunteer opportunities and upcoming community fundraising events: www.rarediseasefoundation.org
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