RARE-X is a non-profit organization focused on accelerating the development of treatments and cures for rare diseases. They achieve this by leveraging technology to enable patient communities to securely collect and share their data with researchers and clinicians worldwide. Their approach is patient-centered, ensuring data contributors have ownership and control over their data. RARE-X emphasizes inclusivity in research and collaboration across stakeholders to drive progress in rare disease understanding and therapy development​​.

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Research & Family Meetup

Denver, Colorado, December 4th, 2026. This December, MED13L families will gather in person at the Grand Hyatt Denver. The day brings our community together around the latest MED13L research and the chance to spend real time with one another. Early bird pricing available!