Podcasts Health Empowered Patient Podcast Raising Awareness About Barth Syndrome and Other Rare Diseases With Maria Picone TREND.community and Shelley Bowen Barth Syndrome Foundation

Raising Awareness About Barth Syndrome and Other Rare Diseases With Maria Picone TREND.community and Shelley Bowen Barth Syndrome Foundation

Published: April 20, 2020, 9:55 p.m.

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

Download the transcript here

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