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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

The FDA you say? Yes! The Food and Drug Administration (FDA) is the regulatory agency in the United States that reviews and approves (foods and) medicines for use in people....

Spotlight on Rare Disease Caregivers

Caring for someone with a rare disease can be an around-the-clock commitment, leaving caregivers with little time to attend to their own needs. Forty percent (40%) of rare disease caregivers...

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Transitioning to Adulthood

Everyone goes through transitions, or changes, at certain times in their life. During these times your day-to-day routine, priorities, responsibilities, or disease management requirements may change. For someone living with...