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