Connecticut Rare Disease Advisory Council (RDAC)

Co-Chairs

Lesley Bennett

RDAC Coalition Leader, Connecticut Rare Disease Advocates; 2014-2023 NORD CT-Rare Action Network State Ambassador
Legislative appointment: Representative of a patient advocacy group in the state representing all rare diseases

Michele Spencer-Manzon, MD

Associate Professor of Genetics and of Pediatrics; Associate Chief of Clinical Genetics Operations; Pediatric Genomics Discovery Program
Governor appointment: Licensed physician who has expertise in the field of medical genetics

Members

Barbara Cass, RN

Department of Public Health Designee

Dorian Long, MSW

Department of Social Services Designee

Makayla Erazo, Esq.

Department of Insurance Designee

Annie Daniel, MD

Director of the Neuromuscular Center at Hospital for Special Care
Governor appointment: Administrator of a hospital that provides health care to persons living with a rare disease

Saurabh Vaidya

Connecticut Hemophilia Society President
Legislative appointment: Family member or caregiver of a pediatric patient living with a rare disease

Craig Miller, MS

Director of Biomarker Discovery & Portfolio Strategy at Boehringer-Ingelheim Pharmaceuticals
Legislative appointment: representative of the biopharmaceutical industry who is involved in rare disease research and therapy development

Colleen Brunetti, M.Ed, C.H.C.

Pulmonary Hypertension Association Board, Chair (2023)
Legislative appointment: adult living with a rare disease

Joanna Gell, MD

Pediatric Oncologist and Hematologist at Connecticut Children’s Hospital, and Research Scientist at Jackson Laboratories
Legislative appointment: member of the scientific community in the state who is engaged in rare disease research

Mary Caruso

Friedreich’s Ataxia Research Alliance Founding Member
Legislative appointment: caregiver of a child or adult living with a rare disease

Emily Germain-Lee, MD

Professor of Pediatrics at the University of Connecticut School of Medicine and Division Head of Endocrinology & Diabetes at Connecticut Children’s
Legislative appointment: licensed physician who treats persons living with a rare disease

Gary Smart

Director of Sickle Cell Disease Association of America (SCDAA) Connecticut/Michelle's House
Legislative appointment: representative, family member or caregiver of a person living with a rare disease