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Designates a House-supported "Barth Syndrome Awareness Day" and affirms priorities to improve awareness, diagnosis, research, and development of treatments and diagnostics for Barth syndrome. It calls for efforts to identify regulatory pathways and other supports to advance therapies for this ultrarare, serious genetic disorder that currently has no FDA‑approved treatments.
Referred to the House Committee on Energy and Commerce.
Introduced March 10, 2025 by Paul Tonko · Last progress 12 months ago