In May 2022, Connecticut Governor Ned Lamont signed House Bill 5500 into law, which will help establish a permanent Rare Disease Advisory Council (RDAC) in the state. This follows-up on the temporary rare disease task force established in the state from 2017 to 2019.
An RDAC is an official platform that allows stakeholders to make recommendations to state policymakers on matters surrounding rare diseases, including the need for increased awareness, access to diagnostic tools, and more accessible and/or affordable treatments.
The Connecticut RDAC will be composed of various disease stakeholders – from patients to caregivers to families and healthcare providers – who work together to better address the needs of rare disease patients in the state.
The first RDAC was established in North Carolina in 2015 and the National Organization for Rare Disorders (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.
“This is a great day for the Connecticut rare disease community! The Connecticut RDAC coalition would like to thank Governor Lamont, Lt. Governor Susan Bysiewicz, the Connecticut General Assembly Public Health Committee, especially Committee Chair Representative Jonathan Steinberg and Ranking Member William Petit for all their support and hard work on this legislation,” said Lesley Bennett, NORD Connecticut Rare Action Network Volunteer Ambassador. “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.”
“Sincerest appreciation to the coalition of lawmakers, patients, caregivers, and other members of the rare disease community who worked together to establish a permanent Rare Disease Advisory Council here in Connecticut,” said Peter Saltonstall, NORD President and CEO. “NORD has its roots in this state – through our founder, Abbey Meyers, and our founding nearly four decades ago. It’s incredibly empowering that Connecticut will have a permanent RDAC to help give its residents a stronger voice in their government and provide further partnership opportunities.”