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Case study: setting up a patient-led foundation to distribute funding for research on rare disease

Case study - experience of setting up a patient-led foundation to distribute funding for research on rare disease

In this case study, you’ll hear an example from Rare Disease Foundation in Canada, of how patients can influence research by collaborating with academic researchers to decide priorities and how research funding is distributed.

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The Power of Patient Advocacy in Genomics: Influencing Research, Clinical Practice and Decision Making

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