From newly-diagnosed to FDA advisor: a PBC advocate’s story

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. Further, Danielle’s role as a patient representative at an FDA hearing underscored the need for regulatory systems to evolve and better accommodate patient needs. Her story is a testament to the power of community, education, and the relentless pursuit of advocacy to drive meaningful change in healthcare.