Rare Disease Advisory Council
Connecticut Rare Disease Advisory Council (RDAC)
Public Act 22-58, Section 48 established a Rare Disease Advisory Council in the state of Connecticut. The Council's purpose is to advise and make recommendations to the Department of Public Health and other state agencies, as appropriate, regarding the needs of persons in the state living with a rare disease and such persons' caregivers. DPH hosts the council for administrative purposes only.
Resources
- 2024 Annual Report
- Current Members
- Additional information about RDACs in other states can be found on the National Organization for Rare Disorders (NORD) Website. DPH has no affiliation with NORD.
Current Meeting Schedule
The group currently meets on the fourth Tuesday of each month from 2:00-3:00pm, unless noticed otherwise. All meetings are publicly noticed on the Secretary of State's Public Meeting Calendar in accordance with the Connecticut Freedom of Information Act. Meetings can be joined via the linked Zoom.
Upcoming Events
-
April 7, 2026 | noon to 3pm: UConn (Storrs) Rare Disease Event
- Location: UConn School of Pharmacy, 69 North Eagleville Rd. Unit 3092, Storrs, CT 06269
- Parking will be available at the North Garage, located at 103 North Eagleville Road, Storrs, CT 06269
- To register contact: ashley.jeong@uconn.edu
- April 25, 2026 | 9am-noon: Denise D'Ascenzo Walk to Fight Rare Disease
- Location: Quinnipiac University 275 Mt. Carmel Ave, Hamden, CT 06518
- Free parking
- To register for the event please visit: thedenisefoundation.com
2026 Meeting Information
March 23, 2026: Agenda
February 24, 2026 Agenda | Minutes | Recording
Januay 27, 2026: Agenda | Minutes | Recording
2025 Meeting Information
| Meeting Date | Information |
| 12/09/2025 | Agenda, Minutes, Recording |
| 10/29/2025 | Agenda, Minutes, Recording |
| 9/30/2025 | Agenda, Minutes, Recording |
| 8/26/2025 | Agenda, Minutes, Recording |
| 7/22/2025 | Agenda, Minutes, Recording |
| 6/24/2025 | Agenda, Minutes, Recording |
| 5/27/2025 | Agenda, Minutes, Recording |
| 4/22/2025 | Agenda, Minutes, Recording |
| 3/25/2025 | Agenda, Minutes, Recording |
| 2/25/2025 | Agenda, Minutes, Recording | Rare Disease Day Flier |
| 1/28/2025 | Agenda, Minutes, Recording |
2023 and 2024 Meeting Information
| Meeting Date | Information |
| 09/11/2023 | Agenda, Minutes, Recording |
| 10/24/2023 | Agenda, Minutes, Recording |
| 11/28/2023 | Agenda, Minutes, Recording |
| 01/23/2024 | Agenda, Minutes, Recording |
| 02/27/2024 | Agenda, Minutes, Recording |
| 03/26/2024 | Agenda, Minutes, Recording |
| 04/23/2024 | Agenda, Minutes, Recording |
| 05/28/2024 | Agenda, Minutes, Recording, Slides, PDF |
| 06/25/2024 | Agenda, Minutes, Recording |
| 07/23/2024 | Agenda, Minutes, Recording, Slides |
| 8/27/2024 | Agenda, Minutes, Recording |
| 9/24/2024 | Agenda, Minutes, Recording, Slides |
| 10/22/2024 | Agenda, Minutes, Recording |