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RDAC identifies newborn-screening additions and conditional waivers for progressive neurodegenerative diseases as advocacy priorities
Summary
Council members flagged adding spinal muscular atrophy–type disorders to newborn screening lists previously under federal review and asked the RDAC to advocate for conditional waivers to cover critical home nursing for progressive neurodegenerative pediatric conditions.
The Connecticut Rare Disease Advisory Council agreed to pursue two advocacy priorities carried over from prior meetings: seeking expansion of the newborn screening panel for specific rare disorders and advocating for compassionate or conditional waivers to provide in-home nursing and supports for children with progressive, neurodegenerative disorders.
The nut graf: Council members said that timely screening and targeted waivers could prevent rapid functional decline in infants with severe conditions and reduce acute family crises; they tasked…
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