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.

Christina Hartman Naa10-related syndrome and RARE-X
Insights

A Fledgling Rare Disease Nonprofit Finds Hope in a RARE-X Pilot Program

About six months after Christina Hartman’s daughter Charlotte was born, the infant began missing

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Anthony Philippakis, MD PhD
Insights

Why Data Sharing Is Critical for Accelerating Progress in Rare Disease

Anthony Philippakis is a physician, geneticist, and data scientist. He is currently a cardiologist

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Data Sharing For COVID 19
Insights

Rewriting the Future with Data

A global pandemic by its very nature would seem to be the antithesis of a rare disease, but the

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RARE-X Moves from Vision to Action
Insights

RARE-X Moves from Vision to Action

It was at a hotel in Newport Beach, California in 2016 that members of the patient advocacy

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Patients' Data Powering Progress Video
Videos

RARE-X and Federated Data Video

A quick video overview of RARE-X and how it is using Federated Data to help patients and

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Megan O'Boyle International Registry Seminar
Insights

How One Rare Disease Advocate Learned to Look Across Diseases

When RARE-X first sought to recruit Megan O’Boyle as patient engagement lead for the nonprofit,

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World Economic Forum Logo
Reports

World Economic Forum Global Data Access For Solving Rare Disease Report 2020

The need to reframe our approach and response to rare disease is urgent. Approximately 10% of the

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Advancing Models of Patient Engagement
Reports

Advancing Models of Patient Engagement: Patient Organizations as Research and Data Partners

FasterCures, alongside other patient-focused advocacy organizations, has long worked with

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