lunes, 22 de junio de 2026

Lessons Learned from our Roundtable with Rare Disease Advocates

https://www.fda.gov/news-events/fda-voices/lessons-learned-our-roundtable-rare-disease-advocates?utm_medium=email&utm_source=govdelivery There is no substitute for sitting across the table from the people we serve. Recently we had the privilege of joining Acting Commissioner Kyle Diamantas, Acting Chief of Staff Lowell Zeta, and Deputy Commissioner Grace Graham for a roundtable discussion with 15 dedicated rare disease leaders. Hearing directly from patients and family members who navigate these incredibly challenging conditions every day was both grounding and motivating. The conversation reinforced our shared mission and highlighted several key areas where the U.S. Food and Drug Administration must continue to evolve to meet the unique needs of the rare disease community.

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