RARE-X continues as an independent research platform, and expands its capabilities to support research through medical record data collection and medical management for families using Ari, Citizen Health's AI teammate
SAN FRANCISCO and BOSTON, Sept. 8, 2026 /PRNewswire/ -- Global Genes has entered a strategic partnership with Citizen Health to provide the technology behind RARE-X, its rare disease data collection program. RARE-X serves more than 10,000 participants in collaboration with 135 patient advocacy communities, with roughly 38 percent of participants residing outside the United States. The selection will be announced live tomorrow at Global Genes' RARE Drug Development Symposium in Boston.
RARE-X will continue to operate as its own fully independent research platform under Global Genes, which continues to set the RARE-X research agenda and govern the data. The move to Citizen Health's platform opens new opportunities to collect and connect data across more rare disease communities, while providing immediate value to patients. RARE-X has spent years building an instrument library specifically for rare diseases, capturing symptom severity, progression and burden of illness in structured form, including validated instruments and custom surveys. Citizen Health can retrieve participants' medical records from more than 4,000 U.S. institutions on their behalf, and organize them into datasets averaging over 10 years of longitudinal information including genetics, full clinic notes and imaging. These two datasets - the lived experience patients report over time alongside clinical data - build a far more comprehensive picture to inform research and drug development.
RARE-X participants will also have the option to use Ari, Citizen Health's AI teammate. Ari gathers medical records from every provider and works over text, turning daily symptoms into trends, prepping families for appointments, finding public benefits they qualify for, and taking on insurance denials and school paperwork. Ari is an added benefit immediately available to all RARE-X participants. Participants control their information across both platforms and can opt in or out of data sharing for research at any time.
The partnership is also a commitment to change what research asks of families. Caregivers of a child with a rare disease provide an average of 53 hours of care a week, compared with 30 hours for caregivers of children generally, according to a study by Global Genes and the National Alliance for Caregiving. Research participation asks them for more on top of that, some of it describing what their own clinicians may have already documented. The families with the most to contribute are often the least able to, due to the burden placed on them through traditional research methods.
"RARE-X was built with our patient advocacy partners, and that commitment continues with this partnership. We've looked hard at what our communities need. Comprehensive data bringing together patient-reported experience and clinical records will accelerate urgently needed progress in rare diseases. We are dedicated to partnering with communities to collect this critical data while making it easier for participants to provide it. Citizen Health is a unique and forward looking partner rethinking how data gets collected, and has built a product specifically for the rare disease community," said Charlene Son Rigby, Chief Executive Officer, Global Genes.
Over time, the aim is to stop asking participants to re-enter what a medical record already contains, and instead put that time toward augmenting it: capturing what the record cannot and correcting what it gets wrong or leaves out. And by using standardized, research-grade measures, RARE-X enables the robust collection of regulatory-grade patient experience data needed for clinical trials and beyond. This is the first of several changes the two organizations intend to make to how rare disease research is conducted.
"Global Genes has built the connective tissue of this field, with more than 90 organizations across thousands of diseases that would otherwise be working alone. We bring the technology and a commitment to building something families will actually want to use. We both want the same two things at once: to make a patient's day easier now, and to get better treatments to them faster. Those tend to be treated as separate goals. They are not," said Farid Vij, Co-Founder and Chief Executive Officer, Citizen Health.
For researchers, cohorts can be defined by diagnosis, genetic variant, symptom profile, treatment history and consent status in a single query rather than assembled across disconnected sources. And when de-identified data is licensed for research, a share of the revenue returns to the patient advocacy groups and patients who generated it. Citizen Health has already distributed more than $1 million to rare disease communities. Advocacy groups and patients have long supplied the data that makes rare disease research possible while capturing none of its value.
Advocacy organizations that want to learn more can visit citizen.health/rarex or globalgenes.org/rarex-citizen/
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 890 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 globalgenes.org.
About Citizen Health
Citizen Health is building the future of healthcare, starting with rare disease. By combining AI, community, and longitudinal health data, Citizen Health empowers patients to take control of their care and contribute to regulatory-grade data that can accelerate treatments. Its AI teammate, Ari, gathers medical records from every provider and takes on the symptoms, appointments, insurance, benefits, and school paperwork a rare disease diagnosis puts on a family, all by text. Citizen Health is headquartered in San Francisco, California. Learn more at citizen.health.
SOURCE Global Genes
Share this article