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

<p><strong>Maria Picone</strong> founder TREND.Community and <strong>Shelley Bowen</strong>, 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.</p> <p>@TRENDCommunity @BarthSyndrome</p> <p>#rarediseases #RDW #RareDiseaseDay #patientfocused #GeneticDisease</p> <p><strong><a title="TREND Community" href="http://trend.community" target="_blank" rel="noopener">TREND.Community</a></strong></p> <p><strong><a title="Barth Syndrome Foundation" href= "http://barthsyndrome.org" target="_blank" rel="noopener">Barth Syndrome Foundation</a></strong></p> <p> </p>