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

Collaboration will offer education, services, and access to secure data-collection technology and support research for more than 800 rare disease organizations in Global Genes’ Foundation Alliance

ALISO VIEJO, Calif., October 20, 2021 — Global Genes, a leading international rare disease advocacy organization, today 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.

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 than1,000 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.”

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.”

Global Genes and RARE-X share the same vision of building diversity, equity, and inclusion into their programs, as evidenced by numerous initiatives and partnerships the organizations have established to enhance health equity in rare diseases. As examples of the depth and timeliness of these commitments, Global Genes is partnering with the Rare Disease Diversity Coalition (RDDC) on its upcoming RARE Health Equity Summit in November, and RARE-X is embarking on a DEI project for regional data collection to guarantee access for communities underrepresented in research.

About RARE-X

RARE-X is a 501(c)(3) rare disease technology nonprofit focused on supporting the acceleration and development of life-altering treatments and future cures for patients impacted by a rare disease. Enabled by best-in-class technology, patients, researchers, and other technology vendors, RARE-X gathers structured, fit-for-purpose data to share broadly, benefitting from 21st-century governance, consent, and federated data-sharing technology.  RARE-X is building the largest collaborative patient-driven, open-data access project for rare diseases globally. For more information, visit www.rare-x.org.

About Global Genes®

Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of our mission, we connect, empower, and inspire the rare disease community to stand up, stand out, and become more effective on their own behalf ⁠— helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. We serve the more than 400 million people around the globe and nearly one in 10 Americans affected by rare diseases. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit our Resource Hub.

Media Contacts:

Tom Hume

Media Contacts:

Laura Vinci
Finn Partners


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