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Global Genes and RARE-X Partner to Enable Patient Data Collection for Rare Disease Groups

Global Genes, a leading international rare disease advocacy organization, announced a partnership with RARE-X to equip patient communities to leverage their data to drive rare disease research and drug development.

RARE-X, a technology nonprofit, securely gathers, structures, and shares patient-owned data to accelerate diagnosis, treatments, and cures for rare disease. By combining forces with Global Genes, RARE-X will provide expertise, content, tools, technologies, and support services to enable patient communities to safely collect and share their data with researchers worldwide.

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Global Genes provides programs, services, and tools to connect, engage and empower patients, caregivers, and communities to drive progress within and across the more than 7,000 known rare diseases. Global Genes’ RARE Foundation Alliance supports and connects more than 800 rare disease patient organizations, representing more than 1,000 rare diseases worldwide.

“Patient data is perhaps the most valuable asset rare disease communities can leverage to generate research interest and spur drug development in their condition area,” said Craig Martin, CEO of Global Genes. “Working with RARE-X, we’ll make it possible for rare disease communities to collect, utilize, and share their data to generate progress toward treatments.”

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As part of the collaboration, RARE-X will build data-collection portals for interested patient communities, and work in partnership with Global Genes to educate, train, and provide ongoing support to ensure patient communities get the most out of their data collection efforts. The Global Genes/RARE-X partnership will also provide undiagnosed and “N-of-1” patients with a dedicated entry point and tool for data collection. RARE Foundation Alliance member organizations can begin signing up for RARE-X in the first quarter of 2022. Access to the RARE-X Data Collection Platform will be free to participating patients and patient organizations.

RARE-X is uniquely equipped to address challenges patient organizations face when deciding to collect patient data. The RARE-X Data Collection Platform uses best-in-class technology and data governance models that are proven to work at scale.

“Global Genes has established itself as a visionary organization for helping rare disease organizations start, grow, and thrive,” said Charlene Son Rigby, CEO of RARE-X. “By adding and integrating RARE-X’s data-collection capabilities into Global Genes’ offering to its network, we’ll make it possible for many more patient groups to benefit from faster research breakthroughs.”

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