Erik Lontok, PhD

Dr. Erik Lontok joined the Coalition for Aligning Science (CAS) in August 2023 as a Senior Fellow bringing a wealth of expertise from the rare disease space to execute on CAS workstreams in neurodevelopment and neuropsychiatry.

Dr. Lontok most recently served as the Director of Research for the Barth Syndrome Foundation. On behalf of this ultra-rare disease community, he advocated for and led collaborative research efforts in Barth heart monitoring, bloodspot-based diagnostics, and the development of gene and enzyme replacement therapies. As the former Chief Science Officer of the Lipedema Foundation, he successfully engaged novel researchers, key clinical leaders, and patient advocates to launch the lipedema research field and drove the development of the lipedema patient registry to engage individuals in research participation.

Previously, Dr. Lontok was a Senior Associate with the Milken Institute, wherein he led philanthropic research efforts in inflammatory bowel disease, leukemia, funding academic research, and lipedema. Alongside NIH, FDA, pharmaceutical, and academic partners, he also facilitated multi-stakeholder collaborations to advance the regulatory science of hepatitis C virus, human immunodeficiency virus, and viral deep sequencing at the Forum for Collaborative Research. Dr. Lontok graduated with a PhD in Biochemistry from the University of California, San Francisco, and upon moving to Maryland, served as an Adjunct Professor of Biochemistry for the University of Maryland, College Park.