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Patient urges Vermont to expand newborn screening and back a Rare Disease Advisory Council
Summary
A Vermont constituent and rare disease patient testified before the Senate Health & Welfare committee in support of H46, urging expanded newborn screening (the witness said Vermont currently screens for 35 conditions), better specialist connections and establishment of a Rare Disease Advisory Council; the Health Department said it supports the council but cited resource limits.
Sarah Elliott, a constituent from Glover living with a rare skeletal condition, told the Senate Health & Welfare committee on March 31 that Vermont should establish a Rare Disease Advisory Council to improve diagnosis, treatment access and family support.
"Rare disease is a bipartisan topic," Elliott said. She described long diagnostic delays—saying it took 25 years to meet with genetic specialists and another 10 years to reach a clinical diagnosis—and urged the committee to expand newborn screening and to connect families with specialists earlier. "In Vermont, we currently screen for 35 genetic conditions on the newborn screening…
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