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

RARE-X on Rare Disease Day 2021

This day, this week, this month has served as an essential connecting point for rare disease

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Insights

Frost Brings Operational Expertise to RARE-X Board as Organization Scales up

Simon Frost, the newest addition to the RARE-X board of directors, describes himself as an

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Press Releases

RARE-X Announces Patient Community Data Collection, Sharing, and Platform Enhancements

Further development of data standards and governance, as well as additional case testing, is made

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Insights

Health Technology Expert and Rare Disease Patient Jason Colquitt Strengthens RARE-X Board

Jason Colquitt, the newest addition to the RARE-X board of directors, remembers the exhaustion he

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Insights

Grossman Brings a Diverse Perspective to the RARE-X Board

Cynthia Grossman, the newest addition to the RARE-X board, says she’s “obsessed with the

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Insights

Patient-Powered Registry Boosts the Study of a Rare Disease

The development of patient registries and natural history studies for rare diseases are critical to

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Resources

Data Standards and RARE-X

Data standards are a big topic that, among other things, involve how data are measured, recorded,

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Teneasha Washington
Insights

RARE-X Launches DEI Scoping Project

For Teneasha Washington, the problem of diversity in rare disease advocacy and research is apparent

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Press Releases

RARE-X Launches Diversity, Equality, and Inclusion Program

New RARE-X DEI program assures the diversity of the rare disease community is represented in the

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Resources

Accelerating Treatments for Rare Disease through Data Sharing – Podcast

Patients’ data is critical to rare disease innovation, but it does little to advance progress if

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