Danielle Alstat | PBC Patient Advocate
PBC Patient-columnist

I've worked as a registered respiratory therapist for over 10 years. I've seen the disparities in healthcare first hand while serving an underprivileged community in St. Louis. I was diagnosed with primary biliary cholangitis at the end of 2019 when I was just 31 years old. Shortly after my diagnosis, the world shut down due to the Covid-19 pandemic. I never imagined I would be working as a Respiratory Therapist during a respiratory pandemic. I saw more death in my time caring for patients in a Covid ICU than in my entire career caring for deathly ill patients. Eventually, I had to give up my love for critical care and start prioritizing myself. I switched to an outpatient setting in respiratory and began my mental health healing. It was during this time I felt a call for patient advocacy. I started my own PBC only support group on Facebook in November 2023. My support group has over 3,000 worldwide patients with PBC. My goal is to foster a safe environment for friendship and support. For more information please search "Life with PBC 💙 Primary Biliary Cholangitis" to join.  At the end of 2023, I was asked to join Rare Disease Advisor as a patient columnist. I am now the PBC Ambassador for their PBC Companion as well. In 2024 I joined the Food and Drug Administration in the U.S. as a special government employee. My role is the PBC patient representative. I was part of the Ocalivia committee panel that took place in September 2024.  In 2025, I joined Friends of the PBC Foundation as the Director of Patient Relations. We had our inaugural Patient Conference in September 2025 with great success. In February of 2026, I stepped up to be the President of the US nonprofit Friends of the PBC Foundation. At the end of 2025, I also joined Health Union as a PBC Patient Leader for primarybiliarycholangitis.net.  Being a healthcare professional and a rare disease patient gives me an interesting voice and experience. I am looking forward to continuing my journey as a strong advocate for patients with Primary Biliary Cholangitis.