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Genetic Testing 101: Know Your Genes

Eighty percent of rare diseases are genetic.1 Genetic testing is a tool that can help identify these conditions in individuals and families. It helps empower people to make informed decisions about their health.

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Rare & Prepared: Emergency Planning for Individuals with Complex Healthcare Needs

According to the Federal Emergency Management Agency (FEMA), nearly half of U.S. adults do not have the resources and plans in place in the event of an emergency.1 Preparing for…

Your Voice Matters

Your Voice Matters: How to Engage with the FDA

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Spotlight on Rare Disease Caregivers

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Transitioning to Adulthood

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