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Rare Diseases

Crowdfunding As a New Approach to Financing Orphan Drug R&D (CANAFORD)

Patients suffering from rare diseases often have limited or no treatment options. When treatments do exist, patients can struggle to access them because many orphan drugs, used to treat rare diseases, are extremely expensive and are not always covered by government insurance plans. Challenges exist for orphan drugs because of the small patient populations that characterize rare diseases, which make it difficult for pharmaceutical companies to achieve an attractive return-on-investment for their research and development costs. In this project, we are exploring a novel solution to this problem that involves using philanthropic funding to identify promising orphan drug candidates, which can then encourage the private sector to invest in bringing the drug to market at a potentially lower cost. Specifically, our project explores donor preferences in the context of donation-based crowdfunding, which involves collecting a large number of small financial contributions to support a specific research project. By means of a survey of potential donors, we will identify the types of drug development projects that different groups of donors find most valuable, and estimate their willingness to donate to these types of projects. Better understanding philanthropic donors’ preferences for medical research projects will benefit those Canadian researchers who may seek to fund their work through crowdfunding. It will also raise public awareness about the possibility of using crowdfunding to fund health research in Canada.