RARE Daily

Global Genes Enters Partnership with RARE-X to Enable Patient Data Collection

October 20, 2021

The International rare disease advocacy organization Global Genes, publisher of Rare Daily, has entered a partnership with RARE-X to equip patient communities to leverage their data to drive rare disease research and drug development.

Photo: Charlene Son Rigby, CEO of RARE-X

RARE-X, a technology nonprofit, securely gathers, structures, and shares patient-owned data to accelerate diagnosis, treatments, and cures for rare disease.

Through the partnership, 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.

“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.”

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.

“By adding and integrating RARE-X’s data-collection capabilities into Global Genes’ offering to its network,” said Charlene Son Rigby, CEO of RARE-X, “will make it possible for many more patient groups to benefit from faster research breakthroughs.”

Author: Rare Daily Staff

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