At the end of May, 2022, the Governor of Connecticut, Ned Lamont, established a permanent Rare Disease Advisory Council (RDAC) for the state by signing House Bill 5500 (HB 5500). This permanent council will replace the temporary task force which was instituted back in 2017. This task force, while effective, was only in effect until 2019.

NORD Project RDAC

The National Organization for Rare Disorders (NORD) is an advocacy organization in the United States which supports those living with rare conditions. The organization began as just a small group of advocates. It’s turned into a large, independent, and powerful organization which was able to pass the Orphan Drug Act back in 1983.

NORD now comprises 300 member organizations representing specific diseases, and 17,000 advocates across the country. They also have global partners. You can learn more about the organization here.

In 2020, NORD created Project RDAC in effort to expand the number of RDACs in the United States. They also hoped to increase support for current RDACs. With Connecticut’s new establishment of a permanent RDAC, there are now 23 states with a council. (Colorado recently became the 24th, and you can read about that development here!) Since 2021 alone, 9 states signed the council into law.

You can learn more about this project here.

RDAC in Connecticut

This new permanent RDAC in Connecticut will be comprised of many stakeholders, such as rare disease patients, caregivers, advocates, family members, researchers, physicians, and more who will work with one another to fulfill various needs for those living with rare diseases in Connecticut. The council will give these stakeholders a louder voice in the government, who is acting on their behalf. Stakeholders will work to issue formal recommendations to the state legislature and state agencies on public policies and healthcare legislation which will best support rare disease patients.

You can read more about the new RDAC in Connecticut and how you can get involved here.