TX SB1140

Establishes the Texas Rare Disease Advisory Council to advise the legislature, governor, state agencies, and private entities on the needs of individuals with rare diseases in Texas

Council membership includes 15+ members: representatives from state agencies (DSHS, HHSC, TDI), a designated institution of higher education, healthcare professionals (geneticist, nurse, physician, pharmacist), hospital administrator, rare disease patients (at least 2), caregivers, patient organization representative, biopharmaceutical industry representative, health insurer representative, and a rare disease researcher

Council duties include developing policy recommendations to improve patient access to specialists, affordable healthcare coverage, diagnostic procedures, and timely treatment; making recommendations on prior authorization and utilization management impacts; and identifying best practices to reduce health disparities and ensure continuity of care for patients transitioning from pediatric to adult care

Requires biennial reports to the governor and legislature by September 1 of each even-numbered year on activities, funding, and legislative recommendations, with draft reports open for public comment

Initial presiding officer to be appointed by the governor by October 1, 2025; council must hold initial meeting by January 1, 2026, and meet monthly during 2026; thereafter must meet at least quarterly; may solicit gifts, grants, and donations for funding