Dr. Mousumi Bose is the mother of Ilan Betzer (2010-2011), who was born with Zellweger spectrum disorder, a rare genetic disorder of peroxisome biogenesis. As a result of her personal experience with her son, Dr. Bose re-focused her career goals to study rare disease. Over the last several years, Dr. Bose has conducted research and published multiple papers on the role of the family caregiver in the management of rare pediatric disorders, as well as a recent literature review on the characterization of severity in Zellweger spectrum disorder. Currently, Dr. Bose holds a faculty position in the Department of Nutrition and Food Studies at Montclair State University in New Jersey, studying quality of life, patient-focused drug development, dietary assessments, and health equity issues in rare disease communities. Dr. Bose is passionate about learning what is important to rare disease families and using that information to improve their lives.
