Global Genes

visited this project
2 months ago
In January 2023, Global Genes and RARE-X, two leading pan-rare disease organizations merged, forming an organization that is now able to truly address the needs of next-generation patient advocates. No matter where someone is in their journey with rare disease - from recently diagnosed to driving research - our organization can provide support, connections, education, and research enablement to help them do more for their family and communities they serve. RARE-X brings a sophisticated research arm and robust data collection program that enables patient communities to collect patient-reported, research-ready data, and researchers the ability to gain access to large numbers of data points and look across diseases to advance therapies.
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