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

Orphanet Journal of Rare Diseases


We provide the first empirical exploration of disease-related innovation by patients and their caregivers. Our aims were to explore to what degree do patients develop innovative solutions; how many of these are unique developments; and do these solutions have positive perceived impact on the patients’ overall quality of life? In addition, we explored the factors associated with patient innovation development, and sharing of the solutions that the patients developed.