Rare Disease Week 2026 - Washington, DC
Moving Forward. Looking Ahead. Together 
PBC Awareness, NFP was proud to join patients, advocates, caregivers, and rare disease organizations for the FDA’s Rare Disease Day 2026: “Moving Forward. Looking Ahead. An Event for Patients.”
One message continues to resonate with us: patients must have a seat at the table.
PBC Awareness, NFP was proud to join patients, advocates, caregivers, and rare disease organizations for the FDA’s Rare Disease Day 2026: “Moving Forward. Looking Ahead. An Event for Patients.”
From patient-focused FDA initiatives and opportunities for meaningful patient engagement to conversations about AI technology, Real-World Data, and Real-World Evidence, the day reinforced how important lived experience is to the future of rare disease research and medical product development.
For people living with Primary Biliary Cholangitis (PBC), these conversations matter. Our experiences with diagnosis, symptoms, treatment, quality of life, access to care, and the everyday realities of living with a rare liver disease provide insights that cannot be captured by clinical data alone.
At PBC Awareness, NFP, our commitment remains clear:
💙 Elevating Patient Voices. Empowering Lives.
We will continue working to ensure the voices and experiences of people living with PBC are represented in the conversations and decisions that impact our community.
To every patient who shares their story, participates in research, joins an advisory meeting, completes a survey, or simply speaks up about what living with PBC is really like—your voice has value, and your experience matters.
Together, we can help move rare disease research and patient engagement forward.
#PBCAwareness #PrimaryBiliaryCholangitis #RareDiseaseDay #PatientVoice