This House resolution supports designating April 5, 2026, as Barth Syndrome Awareness Day. It also recognizes the importance of awareness, early diagnosis, research, new treatments and diagnostic tools, cures, and drug-development pathways for the rare disorder.
The resolution would recognize an awareness day. It does not specify changes to medical care or access to treatment.
The resolution text specifies no expenses or funding.
The resolution says awareness and progress in diagnosis, research, and treatment are important for people with Barth syndrome and their families.
No publicly available information.