Rare disease communities are doing extraordinary research. I help them build the infrastructure to do more of it.

Zollie Yavarow, PhD, helps rare disease patient organizations put AI to work. She leads the AI Working Group for Rare Disease Leaders, a community of more than 100 members. She builds custom tools and helps bring AI into the core of an organization's research strategy, from planning a research program to growing the network of scientists around a disease.

She pairs that with 12 years of rare disease experience spanning bench science, academic training in pharmacology and bioethics, and work inside rare disease patient advocacy organizations. She understands both the science and the day-to-day realities of small, mission-driven teams, and builds solutions that fit both.

AI at the center of your research program

In rare disease, research often starts with the families. Zollie has spent her career helping them build it.

• PhD, Pharmacology · Duke
• MA, Bioethics & Science Policy · Duke
• Chair, ASGCT Ethics Committee
• Lead, AI Working Group for Rare Disease Leaders

She first encountered rare disease as an undergraduate, during a summer internship studying a rare genetic disease, and she has never left the field. She went on to complete a PhD in pharmacology and an MA in bioethics and science policy at Duke University, part of ten years at the lab bench focused on metabolic and neurodegenerative disease.

As a postdoctoral fellow at COMBINEDBrain, she led research infrastructure across multiple patient organizations, including biorepository collection, disease concept model development, IRB protocol preparation, and strategic research roadmaps. As Director of Scientific Engagement and Collaborations at Cure VCP Disease, she helped build the organization's biorepository, patient-derived iPSC lines, international research network, and scientific summit, and pitched its research investment case at the Global Genes RARE Drug Development Symposium at Harvard University.

Today her work centers on AI in rare disease. She founded Zaris Advising to create tools and education that help rare disease organizations do more with small teams. She leads an AI working group of more than 100 rare disease leaders, chairs the Ethics Committee of the American Society of Gene & Cell Therapy (ASGCT), and serves as a volunteer scientific advisor to BPTF Families.

What she cares about most is the work patient communities do against the odds: the families who built registries from spreadsheets, the foundations that funded their first natural history study through grassroots fundraising, and the groups that learned to speak fluent regulatory science because no one else would do it for them. Her advisory work is built around what they need next.