Connecticut establishes a Rare Disease Advisory Council

Connecticut has become the 23rd state to establish a permanent Rare Disease Advisory Council (RDAC).

Rare diseases are defined as any condition that affects fewer than 200,000 Americans. There are more than 7,000 known rare diseases, affecting up to 30 million Americans, and many people living with these diseases face problems in finding provider and treatments for their condition.

The RDAC was part of House Bill 5500 signed into law by Gov. Ned Lamont. Connecticut established a temporary rare disease task force in 2017 that concluded its work in 2019.

“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, the National Organization for Rare Disorders”™ Connecticut Rare Action Network Volunteer Ambassador.