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Connecticut rare-disease advocates push for expanded waivers, emergency protocols and orphan-drug protections
Summary
Speakers at an RDAC meeting outlined legislative priorities including authority to solicit funds (SB562), expansion of Katie Beckett and compassionate waivers (SB801, SB802), emergency-protocol bill HB6920, protections for orphan drugs, and a request that the Department of Public Health pursue a sickle-cell gene-therapy site.
Michelle Spencer Manson, co-chair of the RDAC and a medical geneticist at Yale, and other rare-disease advocates outlined a slate of Connecticut legislative priorities they said would improve care access, emergency treatment and research for patients with rare conditions.
"Our first priority here is for funding SB562," Spencer Manson said, describing a proposed change to allow the group to solicit outside funds for research and public education materials. She said the authority would let the RDAC create a website and educational resources without increasing state appropriation costs.
The group urged expansion of state Medicaid waivers to serve children with rare conditions, naming two bills: SB801 to expand the Katie Beckett waiver and…
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