news

ALBANY, NY — Ahead of Barth Syndrome Awareness Day (April 5th), Congressman Paul D. Tonko (NY-20) announced his 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,” Congressman Tonko said. “To that end, I’m immensely proud of my work alongside advocates to pass my HEART Act, but my work to uplift the needs of those living with these rare conditions is far from over. That’s why I’m 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.”

“We are deeply grateful to Representative Tonko and his bipartisan colleagues for their continued commitment to the Barth syndrome community. His leadership and unwavering support are bringing us closer than ever to realizing what once felt impossible — an FDA-approved treatment for this life-threatening condition. Thanks to their recognition of the urgent need, we may now be just weeks away from a breakthrough that will give hope and change lives for those living with Barth syndrome.” said Emily Milligan, Executive Director of the Barth Syndrome Foundation.

Representatives Gus Bilirakis (FL-12), Ralph Norman (SC-5), Doris Matsui (CA-7), Lori Trahan (MA-3), Joe Wilson (SC-2), Jake Auchincloss (MA-4) joined the Congressman as original cosponsors.

The text of the resolution can be viewed HERE.