Ensuring diversity, equity, and inclusion in rare disease organizations requires focused programs that engage all stakeholders. A nine-month project completed by RARE-X found creating campaigns that raise awareness on how to effectively communicate with physicians and patients and partnering with medical schools to increase interest in students specializing in rare diseases were among the findings.
The project was undertaken to provide a general overview of the rare disease landscape regarding DEI issues and offer recommendations to support RARE-X’s efforts to ensure the long-term development of an inclusive rare disease data platform. It involved a literature review, surveys of patients and caregivers, focus groups, and individual interviews with the broader rare disease ecosystem.
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