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.

Press Releases

Huma and RARE-X partner to accelerate research for 9,500 rare diseases

Huma, Europe’s fastest-growing health technology company1, is partnering with the non-profit

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Press Releases

RARE-X Explores Patient-Owned Data Gathering for Cell and Gene Therapy Developers

In Partnership with ARM Foundation for Cell and Gene Medicine, RARE-X Has Released a White Paper

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RARE-Xtra/Podcasts

RARE-Xtra: The Challenges of Long-Term Follow-Up Studies for Cell and Gene Therapies

Welcome to the inaugural episode of RARE-Xtra, an occasional RARE-X podcast where we take a deeper

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Infographics

RARE-X Infographic – How It Works

RARE-X is paving the way to advance rare disease research.  Faster treatments and cures will be

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Reports

National Economic Burden of Rare Disease Study

The National Economic Burden of Rare Disease Study report was released last month. This study,

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Insights

Smart Technology Brings Virtual Clinical Trials to the Patient

Though the advent of smartphones and inexpensive sensors enables the capture of data that reveal

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Reports

Global Genes Next 2021 Report: A Time for Resilience and Ingenuity

The Global Genes Next 2021 Report: A Time for Resilience and Ingenuity, written by Daniel Levine is

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Events

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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