Whereas Barth syndrome is a rare, life-threatening, genetic disorder which primarily affects males; Whereas Barth syndrome is caused by a mutation in the tafazzin gene (TAFAZZIN, also called G4.5), resulting in an inborn error of phospholipid metabolism, affecting many systems of the body; Whereas Barth syndrome is a multisystem disorder with characteristics including abnormalities of heart and skeletal muscle, low levels of certain white blood cells called neutrophils that help to fight bacterial infections, and delays in growth; Whereas with probably fewer than 10 new Barth infants identified each year in the United States, the incidence of Barth syndrome is likely only 1 in every 300,000 to 400,000 births and could be as few as 1.5 in 1 million; Whereas globally there are approximately 300 individuals diagnosed with Barth syndrome, and, in the United States, there are fewer than 150 individuals diagnosed with Barth syndrome; Whereas Barth syndrome can be fatal in childhood due to heart failure or uncontrollable infection, with approximately 50 percent of deaths due to Barth syndrome occurring within the first year of life and 85 percent before the fifth year of life; Whereas individuals with Barth syndrome who survive to adulthood often have a severely limited life expectancy; Whereas individuals with Barth syndrome, like many other rare disorders, experience challenges with obtaining a diagnosis, limited treatment options, and difficulty finding and accessing treatment centers and physicians with expertise in Barth syndrome; Whereas because the disorder affects multiple systems of the body, a patient with Barth syndrome often requires access to care from experts across a range of medical specialties; Whereas the Barth Syndrome Clinic at Kennedy Krieger Institute is the only interdisciplinary clinic dedicated to the diagnosis and treatment of Barth syndrome in the United States; Whereas, to date, there is no treatment for Barth syndrome that is approved by the Food and Drug Administration (FDA)