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Danielle Alstat is 'All In' leading advocacy for people living with PBC: Hear her story from newly-diagnosed to FDA Advisor.
Manage episode 489041113 series 3601375
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Danielle Alstat, a patient advocate diagnosed with primary biliary cholangitis (PBC), shares her journey from diagnosis to becoming a prominent voice in patient advocacy.
After facing the shock of her diagnosis and the challenges of working as a respiratory therapist during the COVID-19 pandemic, Danielle found solace and support through online communities, notably the PBC Foundation. Her advocacy efforts led her to establish a support group with over 2,000 members, providing a platform for patients worldwide to connect and share experiences.
Danielle emphasises the importance of patient voices in clinical trials, highlighting ethical concerns with long-term placebo use in PBC trials. Her role as a patient representative at an FDA hearing underscored the need for regulatory systems to evolve and better accommodate patient needs.
Through collaboration with various stakeholders, including pharma companies, Danielle advocates for change in clinical trial protocols to ensure patient safety and efficacy. Her story is a testament to the power of community, education, and the relentless pursuit of advocacy to drive meaningful change in healthcare.
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