; Whereas, to date, there is no treatment for Barth syndrome that is approved by the Food and Drug Administration (FDA); Whereas there is a critical need for research and development to advance treatments for Barth syndrome; Whereas, as a result of the Orphan Drug Act, there have been important advances in research on and treatment for rare diseases, including development efforts in Barth syndrome; Whereas the FDA established the Accelerated Approval Pathway in 1992 and Congress codified the pathway in 2012; Whereas the Accelerated Approval Pathway is an important pathway for rare and ultrarare diseases as it allows for earlier approval of drugs that treat serious conditions, and fill an unmet medical need … ; Whereas Congress and the FDA have affirmed the importance of incorporating the patient perspective throughout the drug review process through the FDA’s Patient-Focused Drug Development program; Whereas the Barth Syndrome Foundation, a nonprofit organization established in 2000 to accelerate progress through collaboration between families and scientists, is dedicated to educating, advancing treatments, and finding a cure for Barth syndrome; Whereas the Barth Syndrome Foundation sponsors Barth Syndrome Awareness Day in the United States to increase public awareness and generate additional support for Barth syndrome; and Whereas Barth Syndrome Awareness Day is expected to be observed in the United States for years to come, providing hope and information for patients, caregivers, and families around the country: Now, therefore, be it