Proposal would place rare disease council in state health department

The proposal would place the council in the Department of Health and Human Services, which would provide its administrative support. The council would advise the Governor, the Health and Human Services Secretary, and the General Assembly on rare disease research, diagnosis, treatment, and education.

The proposal describes a 19-member council, with 15 members appointed by the Secretary and other seats filled by legislative leaders and the Governor. The council would have 19 members; the Secretary would appoint 15, and the bill assigns other appointments to legislative leaders and the Governor. The 15 Secretary-appointed members would include health professionals, researchers, people with rare diseases, caregivers, patient groups, insurers, and industry representatives.

The proposal would provide recurring state money for the council's operating expenses. The appropriation is $250,000 in recurring funds. The $250,000 would go from the General Fund to the Department of Health and Human Services for council operating expenses. The appropriation would take effect July 1, 2026, with recurring funds beginning in fiscal year 2026–2027.