PATIENTS' DATA POWERING PROGRESS

Xplore: News, Insights, and Resources

Visit this page often to learn about the latest news, insights, and resources available from RARE-X.

Insights

NIH Unveils New Data Sharing Policy

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

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Videos

Collecting and Sharing Usable Patient-Reported Data on the Patient’s Terms

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

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Videos

What is Data Governance?

When an organization begins to collect patient data, there may be a great deal of focus on such

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Insights

Alexion Provides Early-Stage Funding for RARE-X

Wendy Erler has worked in rare disease patient communities her entire career. She says one theme

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RARE-X - XPlore
Press Releases

RARE-X, Launches First Research Pilot Projects For Rare Disease

First global patient-powered data collection, analysis, and sharing platform will accelerate rare

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Insights

Americans Want Government to Make It Easier to Share Electronic Health Data, Survey Finds

According to a Pew Charitable Trust survey released in September, a majority of Americans want to

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Videos

What are the next steps for RARE-X?

In this video, Patient Engagement Leader Megan O’Boyle and Patient Advocacy Consultant/Data

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Insights

Moving Mountains with Shared Data

Starting in the 1950s, a group of researchers, including the legendary Sidney Farber, were working

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Videos

What is RARE-X building?

In this video, Patient Engagement and Data Leaders, Megan O’Boyle and Vanessa Vogel-Farley,

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Insights

Addressing an Essential Challenge to Data Sharing

While data sharing promises to accelerate the diagnosis of people with rare diseases and the

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Videos

Why is RARE-X so important?

In this video, Patient Engagement Leader Megan O’Boyle, and Data Collection/Neuro Leader Vanessa

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