Xplore: News, Insights, and Resources

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

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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Resources

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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Resources

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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Resources

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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Resources

What is RARE-X? An Introduction.

Patient Engagement Leader, Megan O’Boyle, and Data Collection/Neuro Leader, Vanessa Vogel-Farley,

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Resources

RARE-X Definition Series: Real World Evidence & Real World Data

What is Real World Evidence?  What is Real World Data?  This RARE-X Definition Series Video

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Resources

Elevate Natural History Study Planning and Reach

Megan O’Boyle, Patient Engagement Lead for RARE-X, discusses how rare disease patient

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Resources

Be Heard: Patient Perspectives in Novel Therapeutics Value-Based Discussions

Two important representatives from RARE-X, Vanessa Vogel-Farley, RARE-X – Data

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