US HR1060

Designates April 5, 2026, as "Barth Syndrome Awareness Day" to increase public awareness of the rare genetic disorder

Barth syndrome is a life-threatening condition primarily affecting males, with fewer than 160 diagnosed individuals in the U.S. and approximately 300 globally

Approximately 50% of deaths from Barth syndrome occur within the first year of life, and 85% occur before age five, primarily due to heart failure or uncontrollable infection

No FDA-approved treatment exists for children under 30kg, and only one interdisciplinary clinic (at Kennedy Krieger Institute) is dedicated to diagnosing and treating the disorder in the U.S.

Recognizes the need for improved awareness, early diagnosis, advanced research, new treatments, and regulatory pathways for drug development for ultrarare diseases