TX HB3554

Establishes the Texas Rare Disease Advisory Council with 23 members appointed by the governor (11 members), lieutenant governor (6 members), and speaker of the house (6 members), including state agency representatives, healthcare professionals, researchers, patients, and caregivers

Defines "rare disease" as a condition affecting fewer than 200,000 individuals in the United States

Requires the council to develop policy recommendations for improving rare disease treatment, facilitate research at academic institutions, improve diagnosis strategies for healthcare providers, and advise on emergency preparedness for rare disease patients

Mandates annual reports to the governor and commissioner by September 1 each year summarizing activities and providing legislative recommendations on rare disease research and care

Sets initial member appointments by December 1, 2025, with the first council meeting by January 1, 2026, and first report due September 1, 2026; members serve staggered four-year terms