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Committee lays over funding bill for Rare Disease Advisory Council amid federal program uncertainty
Summary
Senate File 2037 to fund the Minnesota Rare Disease Advisory Council was laid over after the council's executive director told the committee that recent federal restructuring and grant pauses increased the urgency of state-level support for newborn screening and gene-therapy readiness.
The committee heard Senate File 2037, which would provide resources to the Minnesota Rare Disease Advisory Council (RDAC). Erica Barnes, executive director of RDAC, described work the council has done with prior funding: connecting patient groups to researchers, developing a presumptive-eligibility policy…
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