Building a Company for Rare Disease
Learn for scientists founders how to build biotech companies (and raise money).
Amy Krystosik, PhD, MPH Co-founder and President, MED13 Foundation | CEO & Co-founder, Artana Bio. Amy is an epidemiologist and data scientist who co-founded MED13 Foundation after her son was diagnosed with MED13 syndrome, an ultra-rare neurodevelopmental condition. She completed her postdoc in pediatric infectious disease at Stanford Medicine. At the Chan Zuckerberg Initiative, she was a data scientist supporting the rare disease community alongside the Rare As One cohort. At MED13 Foundation, she builds the patient infrastructure that makes ultra-rare diseases viable: natural history studies, biorepositories, and cross-foundation collaboration. At Artana Bio, she's building the evidence layer that identifies shared biological mechanisms across diseases and turns them into patient cohorts large enough to support drug development, clinical trials, and capital allocation. She is passionate about building community with partners who value collaboration, open science, and curiosity.
Dr. Jin Lee is the Founder of the Consortium for Understanding, Research, and Education in X-linked Neurodevelopmental Disorders (Cure NDD) - an international nonprofit uniting researchers, clinicians, patient advocates, and families to accelerate discovery, share knowledge, and drive innovative therapies for X-linked NDDs. She's also a caregiver to a family member with a rare disease. Dr. Lee held leadership roles across biopharma, health insurance, and major hospital systems in innovation and ventures, and currently serves on multiple startup and nonprofit boards. A Presidential Leadership Scholar nominated by four American Presidential Centers, she hasbeen recognized as one of the 100 Most Impactful Women and Allies Shaping the Future of Biopharma, Healthcare, and Life Sciences. Dr. Lee holds a Ph.D. in Experimental Psychology from the University of Oxford and a B.A. from the University of Pennsylvania.
Celestine "Cee Cee" Schnugg. is the founding managing partner of Boom Capital, a San Francisco-based venture capital firm focused on early-stage scientific and biotech investments. Outside of Boom Capital, Celestine "Cee Cee" Schnugg is a staunch advocate for rare disease patients. She is the founder of Project Atlas, a foundation dedicated to accelerating translational research and development so that children do not have to suffer from untreatable diseases. [1, 2]
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