Rare Disease Communities

Thousands of rare disease patients and families have entered their health data in the RARE-X Data Collection Program (DCP), allowing researchers from around the world to access their deidentified data and help further their research.

Any person or guardian with a diagnosed or undiagnosed rare disease can participate in the DCP. We work with Patient Advocacy Groups to organize their communities and encourage participation in their disease’s Data Collection Program on the RARE-X platform.

Patients & Caregivers

Review the list of diseases participating in the DCP below. Don’t see yours listed? Create an account to get started.

Patient Advocacy Groups

More than 80 patient advocacy groups representing 57 disease communities are hosting their data on RARE-X. Learn more here.


Learn more about the data collected in the RARE-X DCP and how to gain access to deidentified patient data here.

Rare Disease Communities Active on the RARE-X Platform

Is your rare disease undiagnosed?

Even one undiagnosed patient can benefit from some of the new science now available in the world of rare disease. Patients who are called “undiagnosed” may be the only patient in the world with their condition. These patients are also called “N-of-1” patients, and for these patients, there are now research methods that can support N-of-1 studies. Some leading research supporting N-of-1 patients includes Gene Therapy and CRSPR. We have developed an effortless way for you to become an informed and supported data generator and contributor. RARE-X developed a platform to guide you through consent, support who you want to share your data with and provide a framework for collecting your valuable health data. You can begin sharing your data here.

If your rare disease community is not currently part of RARE-X, you can still contribute.

Even if your rare disease community is not on the list above, you can still help research by adding your data to the RARE-X platform. From this page, you can enroll and take surveys that will benefit researchers worldwide.  The survey data you enter will be de-identified, meaning names and other personal identifiers will be removed from the data and replaced with a unique code number before data is shared with researchers. Data is encrypted (scrambled) when stored for added security.

For more information about Rare Disease Communities, contact us.

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