Shelley Bowen Barth's guest appearances

Shelley Bowen Barth

Empowered Patient Podcast

Digital Politics with Karen Jagoda

Frank Ochberg

Emee Baldwin

Maria Picone

Michelle Niedziela

David Solomon

Matt Murphy

Robin Smith

Jimmy Carter

Thomas Cowan

Greg Miller

Travis Mickle

Justin Miller

Sean Tucker

Matt Wilson

Chris Young

OwlTail

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

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 <a href="http://trend.community" rel="noopener nofollow" target="_blank">TREND.community</a> <a href="http://barthsyndrome.org" rel="noopener nofollow" target="_blank">BarthSyndrome.org</a> <a href="http://empoweredpatientradio.com/raising-awareness-about-barth-syndrome-and-other-rare-diseases-with-maria-picone-trendcommunity-and-shelley-bowen-barth-syndrome-foundation-transcript" rel="noopener nofollow" target="_blank">Download the transcript here</a>

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

Maria Picone founder TREND.Community and Shelley Bowen, founder Barth Syndrome Foundation were in Washington, DC recently for Rare Disease Week to advocate for more research and awareness about a difficult subject.  Maria and Shelley emphasize the need for members of Congress to join the Rare Disease Caucus and for healthcare activists to show up to have their voices heard about the need for more funding and patient involvement in finding cures for rare and orphan diseases. @TRENDCommunity @BarthSyndrome #rarediseases #RDW #RareDiseaseDay #patientfocused #GeneticDisease TREND.Community Barth Syndrome Foundation

Maria Picone founder TREND.Community and Shelley Bowen, founder Barth Syndrome Foundation were in Washington, DC recently for Rare Disease Week to advocate for more research and awareness about a difficult subject.  Maria and Shelley emphasize the need for members of Congress to join the Rare Disease Caucus and for healthcare activists to show up to have their voices heard about the need for more funding and patient involvement in finding cures for rare and orphan diseases. @TRENDCommunity @BarthSyndrome #rarediseases #RDW #RareDiseaseDay #patientfocused #GeneticDisease <a href="http://trend.community" rel="noopener nofollow" target="_blank">TREND.Community</a> <a href="http://barthsyndrome.org" rel="noopener nofollow" target="_blank">Barth Syndrome Foundation</a>

Rare Disease Activists Go to DC with Maria Picone TREND Community and Shelley Bowen Barth Syndrome Foundation