House committee narrows Rare Disease Advisory Council membership; caregiver urges council to address isolation and system navigation

The House Human Services Committee moved a set of membership and drafting changes while marking up a bill to create a Rare Disease Advisory Council (RDAC), and heard testimony from a caregiver and genetic navigator who urged the panel to address family isolation, care coordination and coverage gaps.

Committee members agreed by discussion—not recorded as a roll-call vote—to reduce and reconfigure the council's membership list, remove language that allowed a single person to fill multiple membership roles, and delete a backup subdivision intended to add a gubernatorial appointee if the council had an even number of members. After deliberation the committee settled on an 11‑member advisory body that includes: a Department of Health representative; one member of the Health Equity Advisory Commission (selected by that commission); two individuals with lived experience of rare disease; one representative of academic rare‑disease research; one parent or guardian of a person living with a rare disease; a practicing physician and a practicing nurse; a geneticist or genetic counselor; a pharmacist; and a representative ("Dale" in the transcript) who provides services to people with rare conditions. The committee also added…