Xplore: News, Insights, and Resources

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

Xplore RARE-X

Sleep Consortium
Press Releases

Sleep Consortium Launches Sleep Patient Data Collection Initiative to Accelerate Therapeutic Development

Sleep Consortium and RARE-X, the Global Genes research program and patient-owned data collection

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Press Releases

HDSA and RARE-X Launch HD Data Collection Initiative to Accelerate Treatments for Huntington’s Disease

The Huntington’s Disease Society of America (HDSA) and RARE-X, the Global Genes patient-driven

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Press Releases

RARE-X to Launch an Open Science Data Challenge to Address Rare Neurodevelopmental Diseases

The first Xcelerate RARE challenge will launch in the spring of 2023 and will focus on rare

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Press Releases

RARE-X and CoRDS Collaborate to Improve Patient Outcomes for Rare Diseases

Partnership supports rare disease research and breaking down data silos to accelerate treatments 

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Videos

How to upload Genetic Reports on RARE-X

Global Genes/RARE-X Sr Director of Scientific Programs Karmen Trzupek explains how to upload

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Videos

RARE-X Lunch & Learn – “How To Tell Your Story Through Data”

In this video, Christina O’Keeffe from Wiedemann-Steiner Syndrome Foundation presented their

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Videos

Dr. Wendy Chung explains the importance of uploading genetic reports on RARE-X

In this video, Dr. Wendy Chung explains the importance of patients and caregivers uploading genetic

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Insights

RARE-X Launching Xcelerate RARE: An Open Science Data Challenge to Address Rare Neurodevelopment Diseases

This spring, RARE-X will bring together researchers and data scientists to use patient-provided

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RARE-Xtra/Podcasts

An Open Science Data Challenge to Address Rare Neurodevelopment Diseases

RARE-X will kick off Xcelerate RARE: A Rare Disease Open Science Data Challenge this spring. For

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