BOARD OF DIRECTORS
Mousumi Bose, PhD
Maplewood, New Jersey
Dr. Mousumi Bose is the mother of Ilan Betzer (2010-2011), who was born with a peroxisome biogenesis disorder. 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, including two recent publications on caregiver-reported outcomes in patients with peroxisomal disorders. Currently, Dr. Bose is an Associate Professor in the Department of Nutrition and Food Studies at Montclair State University in New Jersey, studying quality of life, dietary assessments, and health equity in rare disease communities. She also serves a Board member for the United Leukodystrophy Foundation. Dr. Bose is passionate about learning what is important to rare disease families and using that information to improve their lives.