Maria Picone, Founder, TREND.community and Shelley Bowen, Founder and Director, Barth Syndrome Foundation explain the challenges doctors face in diagnosing a rare disease like Barth Syndrome, the need to educate doctors about symptoms and warning signs of rare diseases, the need for genetic testing to further inform about the possibilities of a rare disease, and the work that is being done to inform patients and their parents about the resources available to support their efforts to find a treatment.
@TRENDcommunity @BarthSyndrome #rarediseases #BarthSyndrome #GeneticDisease
TREND.community
BarthSyndrome.org
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Empowered Patient Podcast