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Rare Disease Advisory Council reports legislative wins, launches statewide resource map and moves September meeting
Summary
Mary Caruso, an RDAC patient-advocate member, told the council four of six legislative priorities passed this session, including funding for the council and a Katie Beckett provision, while emergency-protocol and Duchenne newborn-screening proposals were tabled.
The Rare Disease Advisory Council reviewed a series of committee updates, legislative outcomes and calendar changes during its meeting.
Mary Caruso, a patient-advocate member of the council, summarized the council’s legislative results: “Four of the six legislative priorities passed,” she said, naming funding for the RDAC, the Katie Beckett provision, a sickle cell measure and insurance coverage for a biomarker as successes. Caruso said two items were tabled: proposed emergency protocols and a proposal to add Duchenne muscular dystrophy to the newborn screening panel; she noted the group was watching related federal developments.
Council members said the RDAC’s funding measure passed and that staff will coordinate with the Department of Public Health on next steps. Leslie Bennett, RDAC cochair, said…
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