Global Genes Issues RFP for Next Generation Biomedical Data Collection Program for Rare Disease

Global Genes Issues RFP for Next Generation Biomedical Data Collection Program for Rare Disease

WASHINGTON, D.C. November 17, 2025 -Global Genes, a leading rare disease patient advocacy organization, is issuing an RFP for an innovative technology partner for its RARE-X research platform. This call for proposals focuses on building the next generation of rare disease data infrastructure, and expanding and modernizing the RARE-X patient-powered biomedical data program.

Since RARE-X’s launch, Global Genes has worked in partnership with 130 patient advocacy groups to grow RARE-X to over 8500 participants, across 90 diseases. Today, the needs of the program have evolved. Enhanced usability, data management, and scalability are needed to fully realize the value of RARE-X patient-powered data.

“Data is the catalyst for cures,” commented Charlene Son Rigby, CEO of Global Genes. “With greater than 10,000 diseases there is tremendous need to scale and broaden patient-powered data collection and infrastructure.”

Interested proposers can access the RFP and Single Statement of Objective on the Global Genes website. Global Genes will hold individual meetings at request from interested proposers November 17 – 25. RFP Responses are due December 19 by 5 pm ET. 

Document Link: RFP and Single Statement of Objective.

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, their families and disease communities globally. For nearly two decades, we’ve equipped rare disease patients and advocates with tools, training and support – to connect patients with needed resources, activate communities and advance research. Global Genes serves the more than 400 million people around the globe, and the nearly one in 10 Americans affected by rare diseases. With over 800 patient advocacy group members in our Global Advocacy Alliance, we work with patient advocates, industry partners and academia to build vital ecosystems to progress critical work in rare disease. Learn more at http://www.globalgenes.org.

About RARE-X

RARE-X is the research program of Global Genes. RARE-X provides a highly scalable approach for rare disease data collection, delivered in partnership with patient advocacy groups. RARE-X’s global footprint includes more than 85 disorders from patients in over 90 countries. RARE-X’s innovative, collaborative model is patient-driven with research grade data, and is designed to accelerate research and advance urgently needed treatments. Learn more at http://www.globalgenes.org/about-us/about-rare-x/.

For media inquiries, please contact:
Global Genes: [email protected]