Connecticut Rare Disease Advisory Council Begins to Take Shape

The 13-member Connecticut Rare Disease Advisory Council (RDAC) is in the middle of its making, with the announcement of its first six members.

The council will give patients, families, caregivers, health care providers, advocates, researchers, and other stakeholders the opportunity to make formal recommendations to state agencies and the legislature on developing policy and health care legislation to improve the lives people living with rare disease and their caregivers.

The council will deliver its first report of findings and recommendations in November. Please click here for a summary of the RDAC legislation that Gov. Ned Lamont signed into law. Connecticut joins 24 states having a Rare Disease Advisory Council. To see whether your state is working to create such a group, please check here.

RDAC members will include Insurance, Public Health, and Social Services commissioners, or their designees, and 10 members appointed by the governor and the Public Health Committee leadership. Of those 10 appointments, here are the six announced at Connecticut’s March 23, 2023, celebration of Rare Disease Day:

Patient Advocate Representative: Lesley Bennett, RDAC Coalition Leader, and CT-Rare Action Network Volunteer State Ambassador, National Organization for Rare Disorders.

Pediatric Patient Representative: Saurabh Vaidya, Connecticut Hemophilia Society President, and father of a son with Hemophilia.

Caregiver Representative: Mary Caruso, Friedreich’s Ataxia Research Alliance Founding Member, and caregiver for two adult children living with that rare disease.

Researcher: Joanna Gell, MD, Pediatric Oncologist and Hematologist, Connecticut Children’s Hospital, and Research Scientist, Jackson Laboratories.

Physician Treating Rare Disease Patients: Emily Germain-Lee, MD, Division Head, Pediatric Endocrinology and Diabetes, and Director, Center for Rare Bone Disorders, Albright Center, and Osteogenesis Imperfecta.

Patient Representative: James Rawlings, R.PH, MPH, President/CEO Sickle Cell Disease Association of America, Connecticut, Michelle’s House.

We’ll let you know when the rest of the appointments are official. They include representation of hospitals, the biopharmaceutical industry, and people living with a rare disease.