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When an organization begins to collect patient data, there may be a great deal of focus on such
Wendy Erler has worked in rare disease patient communities her entire career. She says one theme
First global patient-powered data collection, analysis, and sharing platform will accelerate rare
According to a Pew Charitable Trust survey released in September, a majority of Americans want to
In this video, Patient Engagement Leader Megan O’Boyle and Patient Advocacy Consultant/Data
Starting in the 1950s, a group of researchers, including the legendary Sidney Farber, were working
In this video, Patient Engagement and Data Leaders, Megan O’Boyle and Vanessa Vogel-Farley,
While data sharing promises to accelerate the diagnosis of people with rare diseases and the
In this video, Patient Engagement Leader Megan O’Boyle, and Data Collection/Neuro Leader Vanessa
Patient Engagement Leader, Megan O’Boyle, and Data Collection/Neuro Leader, Vanessa Vogel-Farley,
What is Real World Evidence? What is Real World Data? This RARE-X Definition Series Video