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

RARE-X and C-Path Establish New Collaboration for Rare Disease Data Sharing

RARE-X and Critical Path Institute align on their mission and commitment for data sharing to

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An Opportunity to Band Together

Geoff Rhyne’s daughter Ella began missing milestones at around three months of age. His wife, a

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Insights

Recognizing the Value of Data

Lisa Manaster learned the value of data at Columbia University while earning a master’s degree in

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Insights

Charlene Son Rigby becomes CEO of RARE-X

RARE-X, the collaborative platform for global data sharing and analysis to accelerate treatment for

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Press Releases

RARE-X Appoints Charlene Son Rigby as CEO

RARE-X expands its leadership team to support the organization’s rapid growth. Aliso Viejo,

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Insights

Accelerating Research by Making Data Accessible

When Ron Garber’s daughter Yaya was diagnosed with 4H Leukodystrophy, he sought out some large,

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Insights

Because Money, Size, and Age Don’t Matter

In January 2021, a group of advocates and parents formed the Coalition to Cure CHD2, a nonprofit

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Press Releases

Patient Groups Begin Using RARE-X’s Transformative Data Collection Platform

Advocacy organizations representing eleven rare diseases initiate efforts to improve patient data

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Insights

RARE-X Becomes a Catalyst for Collaboration for Three AHC Patient Groups

Three years ago, at a New Jersey conference, three patient groups focused on the rare

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Insights

Ensuring Data Silos Don’t Undermine Research

While research and development activities are rapidly advancing within the realm of rare diseases,

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Videos

Privacy and Security for Patient Data Collection

Managing issues of data privacy and security are a big task. Most rare disease patient

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