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


ALISO VIEJO, Calif .– (BUSINESS WIRE) – October 20, 2021–

Global genes, a leading international rare disease advocacy organization, today announced a partnership with RARE-X to equip patient communities to use their data to stimulate rare disease research and drug development.

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RARE-X, a non-profit technology organization, securely collects, structures and shares patient-held data to accelerate the diagnosis, treatment and treatment of rare diseases. By joining forces with Global Genes, RARE-X will provide expertise, content, tools, technologies and support services to enable patient communities to securely collect and share their data with researchers. of the whole world.

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. The 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 that rare disease communities can harness to generate research interest and drive drug development in their area of ​​disease,” said Craig Martin, CEO of Global Genes. “By working with RARE-X, we will enable rare disease communities to collect, use and share their data to drive progress toward treatments. “

As part of this 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 best part of their data collection efforts. The Global Genes / RARE-X partnership will also provide undiagnosed and “N-of-1” patients a dedicated entry point and tool for data collection. RARE Foundation Alliance member organizations can start registering for RARE-X during the first quarter of 2022. Access to the RARE-X data collection platform will be free for participating patients and organizations. of patients.

RARE-X is uniquely equipped to address the challenges that patient organizations face when deciding to collect patient data. The RARE-X data collection platform uses cutting-edge technology and data governance models that have proven successful at scale.

“Global Genes has established itself as a visionary organization to help rare disease organizations start, grow and prosper,” 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 will enable many other patient groups to benefit from faster research breakthroughs.

Global Genes and RARE-X share the same vision for diversity, equity and inclusion in their programs, as evidenced by the many initiatives and partnerships that organizations have put in place to improve health equity in rare diseases. As an example of the depth and timeliness of these commitments, Global Genes is partnering with the Rare Disease Diversity Coalition (DRDC) for its upcoming RARE Health Equity Summit in November, and RARE-X embarks on a DCI regional data collection project to ensure access to communities under-represented in research.

About RARE-X

RARE-X is a 501 (c) (3) rare disease technology-focused nonprofit that aims to support the acceleration and development of life-changing and future treatments for rare disease patients. Using cutting-edge technology, patients, researchers and other technology providers, RARE-X brings together structured and purpose-tailored data to be shared widely, benefiting from governance, consent and technology. 21st century federated data sharing. RARE-X is building the largest patient-focused collaborative open data access project for rare diseases in the world. For more information visit

About Global Genes®

Global genes is a 501 (c) (3) non-profit organization dedicated to removing the burden and challenges of rare diseases for patients and families worldwide. In pursuit of our mission, we connect, empower and inspire the rare disease community to rise up, stand out and become more effective on their own behalf ⁠— helping to drive innovation, meet critical needs, to build capacity and knowledge; and to stimulate progress within and between rare diseases. We serve more than 400 million people worldwide and nearly one in 10 Americans with rare diseases. If you or someone you care about has a rare condition or is looking for a diagnosis, contact Global genes at 949-248-RARE or visit our Resource center.

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Tom hume



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Laura Vinci

Finnish partners


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SOURCE: Global genes

Copyright Business Wire 2021.

PUB: 10/20/2021 08: 00 / DISC: 10/20/2021 08:02

Copyright Business Wire 2021.

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