CS/HB 1373 Summary

• Creates the Rare Disease Advisory Council as an advisory body adjunct to the Department of Health to provide recommendations on improving health outcomes for individuals with rare diseases, defined as conditions affecting fewer than 200,000 people in the United States.

• Council composed of 25 members appointed by the Governor (10 members including state agency representatives, medical professionals, and industry representatives), President of the Senate (5 members), and Speaker of the House (5 members), including patients, caregivers, researchers, and support organization representatives.

• Initial council members must be appointed by September 1, 2021, with the first meeting required by October 1, 2021; members serve 4-year terms except initial gubernatorial appointees who serve 2-year terms to stagger membership transitions.

• Council duties include consulting with rare disease experts, developing strategies for academic research and healthcare provider training on rare disease recognition and diagnosis, providing input to state agencies on issues affecting patients, and submitting annual reports to the Governor and State Surgeon General beginning July 1, 2022.

• Act takes effect July 1, 2021.