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Xplore RARE-X

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 global population or 475 million people are affected by a rare condition, with an estimated 15.2 million individuals expected to have clinical genomic testing for a rare condition within the next five years. The number of countries with national initiatives to sequence patients with rare diseases, as well as healthy individuals, is growing. This genomic data, coupled with phenotypic and clinical data, represents a treasure trove of information critical for shortening the diagnostic odyssey faced by rare-disease patients and for powering research and innovation in diagnostics and therapeutics. We believe that federated data systems offer a promising approach, providing researchers and clinicians with access to global rare-disease datasets while allowing local institutions to protect sensitive personal health data and recognize cultural and ethical expectations about data protection and privacy.

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