Oliveira P., Zejnilovic L., Canhao H., von Hippel E.

Orphanet Journal of Rare Diseases

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The patients afflicted by more than 7000 rare diseases are in “orphan” markets. They can expect little help from producers in the form of specialized products, and they have strong incentives to develop, or adopt solutions developed by peers, to help them cope with the diseases. We don’t know the extent to which patients and caregivers respond to these incentives and innovate, how they perceive impact of their solutions, and how they share their solutions with others. The objectives of this work are: to measure frequency of patient innovation in a population of rare diseases patients; to measure efforts by patients to share their solutions with others; to explore which factors drive patients to come-up with solutions and share them with others.