PATIENTS' DATA POWERING PROGRESS

Xplore: News, Insights, and Resources

Visit this page often to learn about the latest news, insights, and resources available from RARE-X.

Megan O'Boyle International Registry Seminar
Insights

How One Rare Disease Advocate Learned to Look Across Diseases

When RARE-X first sought to recruit Megan O’Boyle as patient engagement lead for the nonprofit,

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World Economic Forum Logo
Reports

World Economic Forum Global Data Access For Solving Rare Disease Report 2020

The need to reframe our approach and response to rare disease is urgent. Approximately 10% of the

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Advancing Models of Patient Engagement
Reports

Advancing Models of Patient Engagement: Patient Organizations as Research and Data Partners

FasterCures, alongside other patient-focused advocacy organizations, has long worked with

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