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 Exchange Patient Innovator Forum to Help Advocates Advance Data to Treatments

Rare disease advocates and organizations have learned that the path to a treatment begins with

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Videos

RARE-X Wants to Build the Data Infrastructure for Rare Diseases

For people with common health problems like diabetes or high blood pressure or high cholesterol,

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Insights

RARE-X Marks a Year of Accomplishments

Since launching its first rare disease communities last June, RARE-X, the collaborative platform

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Videos

Power of Being Counted Author Discusses New Estimate for Rare Diseases

Kirk Lamoreaux, Senior Healthcare Strategist, discusses ‘The Power of Being Counted,’ a report

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Press Releases

RARE-X Releases New Report that Uncovers Large Number of Previously Uncounted Rare Diseases

The ‘Power of Being Counted’ Report reveals previously severely undercounted numbers used for

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Insights

RARE-X Study Aims to Help All Rare Disease Patients Be Counted

For more than a decade, governments, nonprofits, and industry organizations involved in rare

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RARE-Xtra/Podcasts

The Power of Being Counted Report

RARE-X announced that through the development of its new ‘The Power of Being Counted’ Report,

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Insights

RARE-X Names Senior Director of Scientific Programs

Karmen Trzupek first learned about RARE-X while serving on the Board of Directors for the rare

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Press Releases

RUN and UDNF join forces with RARE-X to enable data collection for undiagnosed patients

Rare and Undiagnosed Network and Undiagnosed Diseases Network Foundation join forces with RARE-X to

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Insights

Undiagnosed Patient Organization to Collaborate with RARE-X

Gina Szjanuk and her three children have been on a diagnostic odyssey for more than nine years that

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Press Releases

RARE-X Study Delivers Insights for Diversity, Equality, and Inclusion Programs

New RARE-X DEI report summarizes the diversity challenges facing rare disease communities and

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