Bill > HB3554

This bill establishes the Texas Rare Disease Advisory Council (TRDAC), a 23-member council appointed by the governor, lieutenant governor, and speaker of the house to advise on improving health outcomes for individuals with rare diseases (defined as conditions affecting fewer than 200,000 people in the US). The council will include representatives from various state agencies, healthcare professionals, researchers, patients, caregivers, and industry experts. Members will serve staggered four-year terms, with the governor selecting a presiding officer annually. The council's primary duties include consulting with experts, developing policy and strategy recommendations for rare disease research, diagnosis, and treatment, and making recommendations to state agencies about rare disease-related issues, including emergency preparedness. The council is required to prepare and submit an annual report to the governor and commissioner by September 1st each year, which will be published on the department's website. The bill specifies that initial council members will be appointed by December 1, 2025, with the first meeting to be held by January 1, 2026, and the first annual report due by September 1, 2026. The Texas Department of State Health Services will provide administrative support to the council, and the bill is set to take effect on September 1, 2025.

Health and Social Services

https://capitol.texas.gov/BillLookup/History.aspx?LegSess=89R&Bill=HB3554