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Individuals with Barth Syndrome Chart New Path for the Review of Drugs Share Article Barth Syndrome Foundation’s recent listening session with FDA sheds light on one rare disease community’s acceptance of less certainty of treatment benefits Barth Syndrome Foundation Logo “Before Barth syndrome, to my knowledge, no patient community has specifically discussed the degree of uncertainty it would accept for potential new drugs. BOSTON (PRWEB) March 17, 2021 Barth Syndrome Foundation (BSF) shares initial reactions today to a historic dialogue held in a recent listening session with the U.S. Food and Drug Administration (FDA). The March 3rd, 2021 FDA listening session was requested by members of the Barth syndrome community earlier this year following submission of a global petition. The meeting was a first-of-its-kind and a significant milestone in BSF’s multi-year strategic advocacy agenda that spotlights

United statesEmily milliganKate mccurdyPhelps mcnamaraJames valentinePatient focused drug developmentDrug administrationDivision of cardiologyBarth syndrome foundationDivision rare diseasesSyndrome foundationCentury cures actMedical geneticsDrug evaluationBiologics evaluationPress release