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ALBANY, NY—On Barth Syndrome Awareness Day, Congressman Paul D. Tonko (NY-20) today introduced a bipartisan resolution to raise awareness about the ultra-rare genetic disorder and ensure individuals living with this condition have access to safe and effective treatments.

Rep. Tonko successfully championed the push in Congress to improve visibility and access to treatments for the millions of individuals impacted by rare disease with his Helping Experts Accelerate Rare Treatments (HEART) Act, which was signed into law in December 2022.

“For the millions of Americans living with a rare or ultra-rare disease, precious little information and even fewer treatments are available, leaving patients and their families without options and without hope,” Rep. Tonko said. “To that end, I’m immensely proud of my work alongside advocates to pass my HEART Act. This law amplifies the voices of those living with a rare disease and the doctors who treat them, all while accelerating the development and approval of new treatments. But my work to uplift the needs of those living with these rare conditions is far from over, which is why today I am introducing a resolution to raise awareness for Barth syndrome. I’m thankful to the individuals who have shared their experiences with this life-threatening condition, and I pledge to continue working to ensure Congress meets the needs of those living with a rare disease.”

"On behalf of every patient and family impacted by Barth syndrome, we thank Representative Tonko for introducing this bipartisan legislation to recognize Barth Syndrome Awareness Day as a means for generating greater recognition of the health inequities facing people living with Barth syndrome and other ultra-rare diseases so that access to life-saving treatments can be realized,” said Emily Milligan, Executive Director of the Barth Syndrome Foundation.

Representatives Ralph Norman (SC-5) and Gus Bilirakis (FL-9) joined the Congressman in introducing this bipartisan resolution.

The text of the resolution can be viewed HERE.

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