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.

Insights

Addressing an Essential Challenge to Data Sharing

While data sharing promises to accelerate the diagnosis of people with rare diseases and the

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Videos

Why is RARE-X so important?

In this video, Patient Engagement Leader Megan O’Boyle, and Data Collection/Neuro Leader Vanessa

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Videos

What is RARE-X? An Introduction.

Patient Engagement Leader, Megan O’Boyle, and Data Collection/Neuro Leader, Vanessa Vogel-Farley,

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Videos

RARE-X Definition Series: Real World Evidence & Real World Data

What is Real World Evidence?  What is Real World Data?  This RARE-X Definition Series Video

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Videos

Elevate Natural History Study Planning and Reach

Megan O’Boyle, Patient Engagement Lead for RARE-X, discusses how rare disease patient

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Videos

Be Heard: Patient Perspectives in Novel Therapeutics Value-Based Discussions

Two important representatives from RARE-X, Vanessa Vogel-Farley, RARE-X – Data

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Insights

It Starts with Data

The use of artificial intelligence promises to accelerate the diagnosis of rare disease and speed

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Insights

FDA Forges a Data Strategy

Before Amy Abernethy joined the U.S. Food and Drug Administration in early 2019, she had spent time

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Insights

Tackling the Data Challenges of Cell and Gene Therapy

The advent of cell and gene therapies brings the rare disease community hope of powerful treatments

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Insights

Harnessing Machine Learning to Improve Diagnosis and Treatment of Rare Diseases

One way that RARE-X can help improve the diagnosis and treatment of people with rare conditions is

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Insights

World Economic Forum Proof of Concept for Sharing Rare Disease Data Across Borders

The lack of interoperability between data systems, concerns about patient privacy, and security

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