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Rare Disease Foundation

Providing hope for rare & undiagnosed diseases Tax ID 819326224RR0001


We are a group of parents, clinicians, and scientists who have come together for one purpose – to improve the lives of children affected by rare diseases. We believe that life sciences research and infrastructure can be re-organized to deliver rapid and efficient solutions to patient care problems. We will accomplish this by breaking down the walls that separate research and care in traditional translational research to replace it with a new model for delivering research solutions – translational care. For children with rare diseases, the more conventional processes and timeline of research does not meet their needs. For these patients, research is care. We intend to deliver a multifaceted approach; we endeavour to:

• Perform treatment-focused research into rare diseases
• Provide research grants to directly improve patient care
• Foster the organization of the rare disease community
• Organize families for mutual support regardless of diagnosis
• Advocate to enhance care for those affected by rare diseases
• Build infrastructure to ensure the sustainability of our programs

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