Big News for RARE-X and Rare Disease Families

Dear Global Genes Community,

Today, I’m thrilled to share an exciting new chapter for RARE-X and for the rare disease community. Global Genes and Citizen Health are partnering to expand the reach and capabilities of RARE-X, bringing together two powerful approaches to patient-driven research to help accelerate progress toward diagnoses and treatments.

RARE-X was built around a simple but ambitious idea: rare disease families should have the opportunity to contribute their experiences and data to research, and that data should be collected with the rigor needed to meaningfully inform researchers and drug developers. Thousands of patients and families have contributed to that vision, helping create a growing body of longitudinal data about the realities of living with rare disease over time.

Through this new partnership, RARE-X is moving to the Citizen Health platform. RARE-X will continue to operate as its own fully independent research program under Global Genes. Global Genes will continue to set the RARE-X research agenda and govern the data, while Citizen Health will provide technology infrastructure that opens exciting new possibilities for families and researchers.

One of the possibilities we’re most excited about is the ability to build a much richer picture of rare disease. Once RARE-X moves to the Citizen Health platform, participants will be able to choose whether to link their longitudinal RARE-X survey responses with their electronic health records. Combining what patients and families report about their daily lives with clinical information can give researchers and drug developers a more comprehensive understanding of disease and help inform the path toward better diagnoses and treatments.

For current RARE-X participants, this is a step forward, not a restart. Everything participants have already contributed remains part of RARE-X. As part of the move later this year, participants will be asked to re-consent under updated platform and research terms, a process expected to take about five minutes. You will remain in control of your participation, including whether you choose to link your survey responses with your electronic health records.

The new platform will also give families access to additional tools if they choose to use them. Citizen Health’s AI teammate, Ari, can gather medical records from providers and help families track symptoms, prepare for appointments, identify public benefits, and navigate insurance denials and school paperwork. Ari is entirely optional, and families can continue participating in RARE-X research without using it.

For advocacy organizations, this partnership can also bring greater visibility to their disease areas and create new opportunities to strengthen their missions. Communities already working with Citizen Health will have a pathway to participate in RARE-X, while existing RARE-X communities will gain greater exposure within Citizen Health’s research and biopharma network. Together, we have the opportunity to bring more communities into research and make the data they contribute even more useful.

I’m incredibly hopeful about what this next chapter can mean for rare disease families. By connecting the lived experiences patients share over time with a deeper view of their clinical journeys, we can give researchers a stronger foundation for understanding complex diseases and give drug developers greater insight into where investment and new treatments are urgently needed.

Most importantly, we can continue putting patients and families at the center of that progress. Your experiences, your participation, and your leadership have helped build RARE-X into what it is today and prepared it for the exciting stage of what it is becoming tomorrow.

We believe this is a significant step toward a future where patient leaders have the data, tools, and partnerships they need to help drive drug development forward and bring more treatments to rare disease families in our lifetime. I’m so excited to take this next step together.

With gratitude and excitement,

Charlene Son Rigby
CEO, Global Genes