Written by: Justin Hargrave January 5, 2026 Dr. Beth Barnby has dedicated her career to advancing research, treatment, and care for individuals living with hereditary tyrosinemia (HT). With a deeply personal connection to the disorder, her work has been driven by both scientific pursuit and compassion for the families affected by this rare condition. Barnby is the co-founder of Tyrosinemia Society Inc., a nonprofit organization devoted to increase awareness, improve patient outcomes, and support research funding to cure HT. Through the society, she has worked to connect researchers, clinicians, and families, fostering collaboration and supporting the exchange of critical information. She also serves on multiple committees focused on strengthening clinical care, research coordination, and global outreach for patients, families, and healthcare providers. Her work spans the full spectrum of the disorder, from the more common and life-threatening Type 1 tyrosinemia to the rarer and less severe Types 2 and 3. This comprehensive understanding has made Barnby a trusted leader within the global tyrosinemia community, particularly in conversations centered on long-term treatment strategies and best practices. Barnby’s work complements the efforts of organizations like the Network of Tyrosinemia Advocates, which focuses on addressing the immediate needs of children and families living with HT. Together, these efforts help bridge urgent care with long-term research and systemic improvement. In recognition of her impact, Barnby was honored with the Tyrosinemia Hero Award, an exclusive distinction launched by the Network of Tyrosinemia Advocates to celebrate individuals who demonstrate exceptional care and compassion for those living with hereditary tyrosinemia. Award recipients receive a distinctive enamel pin symbolizing their dedication to the community, while families are also given a pin to present to someone who has made a meaningful difference in their own journey, highlighting the vital support networks behind every patient. Those who work closely with Barnby describe her as a source of hope: someone who listens deeply, offers guidance generously, and remains steadfast in her pursuit of better outcomes. Her advocacy serves as a reminder that progress in rare disease care is driven as much by empathy as it is by science. Through her leadership, compassion, and commitment to advancing tyrosinemia treatment, Beth Barnby continues to make a lasting impact on the HT community, and exemplifies what it means to be a Tyrosinemia Hero.