The bill establishes the Texas Rare Disease Advisory Council, which is tasked with advising the legislature, governor, state agencies, and private entities on the needs of individuals with rare diseases. The council will consist of various members, including representatives from higher education, state departments, healthcare professionals, and individuals affected by rare diseases. The bill outlines the appointment process for council members, which includes initial appointments by specific authorities and a transparent application process for future vacancies. The council is required to meet quarterly and will conduct its initial meeting by January 1, 2026.

Additionally, the advisory council is mandated to develop policy recommendations to improve access to healthcare for rare disease patients, make recommendations to state agencies and insurers regarding treatment provisions, and identify best practices for health equity and continuity of care. The council will also prepare a biennial report on its activities and recommendations, which will be made available for public comment before submission. The bill allows the council to solicit funding through gifts and grants to support its operations. The provisions of this act will take effect on September 1, 2025.

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