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Documentary Reveals Rare Disease Challenges, Fuels Advocacy

4/14/2025

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Summary

Story summary

Lainey Moseley, founder of CHOPS Syndrome Global, shines a light on the challenges faced by families dealing with rare diseases in her powerful documentary, "Rare: A Rare Disease Revolution." With over 6,000 rare diseases impacting 300 million people worldwide, she underscores the vital role of community and genomic diagnosis in fueling advocacy and research, as families take charge in the quest for treatments for their children.

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Story summary

Lainey Moseley, founder of CHOPS Syndrome Global, shines a light on the challenges faced by families dealing with rare diseases in her powerful documentary, "Rare: A Rare Disease Revolution." With over 6,000 rare diseases impacting 300 million people worldwide, she underscores the vital role of community and genomic diagnosis in fueling advocacy and research, as families take charge in the quest for treatments for their children.