“It didn’t feel like anything unusual because we had already been through so much”: Disability-related research experiences of families with children enrolled in the undiagnosed diseases network
Kevin Mintz, Elisa N. Altamirano, Meghan C. Halley, Krysta S. Barton et autres
PURPOSE: In recent years, researchers have brought attention to the underrepresentation of people with disabilities in biomedical research, including genomics research. However, little is known about how disability-related experiences influence participation in rare disease research. This omission is striking because rare diseases …
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Genetics in Medicine