Xplore: News, Insights, and Resources

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

Insights

A Ready Source of Funding to Advance Rare Disease Therapies

When California voters approved Proposition 14 in 2020, it created $5.5 billion in funding for the

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Insights

RARE-X Convenes RARE-X Exchange, Organization’s Inaugural User Conference

Ryan Colburn has a penchant for things that go fast. He’s worked as an engineer on racecars,

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Uncategorized

RARE-X Science & Research Roundup – the Exchange Forum Edition

Karmen Trzupek, Senior Director of Scientific Programs for RARE-X, recaps Exchange – A Patient

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Videos

RARE-X Science & Research Roundup – recapping the August 18, 2022 call

Karmen Trzupek, Senior Director of Scientific Programs for RARE-X, recaps the August Science and

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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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