At the end of October, the National Institutes of Health introduced a new data management and

Megan O’Boyle discusses the challenges of starting a rare disease patient registry and gives

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