The bill establishes the Texas Rare Disease Advisory Council, which is tasked with advising the governor, state agencies, and private healthcare entities on strategies to improve health outcomes for individuals diagnosed with rare diseases. The council will consist of 23 members appointed by the governor, lieutenant governor, and speaker of the house, with specific representation from various healthcare and research sectors, including geneticists, healthcare providers, and individuals affected by rare diseases. The council is required to meet regularly, develop policy recommendations, and provide annual reports on its activities and recommendations for legislative action.

Key provisions of the bill include the establishment of the council under a new chapter in the Health and Safety Code, with defined roles and responsibilities for its members. The council will also provide administrative support and resources as needed. The initial appointments to the council must be made by December 1, 2025, with staggered terms for members, and the council is required to conduct its first meeting by January 1, 2026, and submit its first report by September 1, 2026. The bill is set to take effect on September 1, 2025.

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