Press Release from Connecticut General Assembly

Hope, technology, policy, community, and advocacy—all topics discussed on Feb. 28 at an event at Hartford’s Legislative Office Building to commemorate 2024 Rare Disease Day and the work of the state's fledgling Rare Disease Advisory Council.

House Republican Leader Vincent Candelora (R, 86) was on hand to provide opening remarks at the event and to support constituent and North Branford resident Mary Caruso, a council member and parent to two children living with Friedreich's ataxia (FA). FA is a genetic disorder impacting the nerves and gradually deteriorates functions of the body.

Candelora told the assembled crowd that the state was blessed to have this council because it provides a platform to channel the stories—the good and the challenging—about the impact of living with a rare disease. The authorization to create the council was adopted by the legislature in 2022.

Candelora represents the 86th Assembly District, serving residents of North Branford, Durham, East Haven, and Guilford.