Connecticut Establishes a Rare Disease Advisory Council

Connecticut Governor Ned Lamont signed into law a bill that includes provisions to establish a permanent Rare Disease Advisory Council (RDAC) in the state.

Photo: Connecticut Governor Ned Lamont

Connecticut established a temporary rare disease task force in 2017 that concluded its work in 2019, but the Rare Disease Advisory Council created as part of the new law will be permanent. The RDAC will include a diverse group of stakeholders who will work together to address the needs of the rare disease community in Connecticut.

“This RDAC will give patients, families, caregivers, health care providers, advocates, researchers, and other stakeholders an opportunity to make formal recommendations to state agencies and our legislature on ways to develop public policy and health care legislation that will improve the lives of those impacted by a rare disease in Connecticut,” said Lesley Bennett, National Organization for Rare Disorders Connecticut Rare Action Network Volunteer Ambassador.

NORD established Project RDAC in 2020 to increase the number of RDACs across the country and help optimize existing RDACs. Including Connecticut, a total of 23 states have signed legislation into law creating a Rare Disease Advisory Council, with RDAC legislation being signed into law in nine states since the start of 2021 alone.

Author: Rare Daily Staff