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Rare Disease Advisory Council reports newborn CMV screening win, expands sudden-death genetic testing
Summary
The state Rare Disease Advisory Council reported passage of newborn CMV screening legislation, work on telehealth access, community outreach and a new program to fund genetic testing for unexplained sudden deaths in young people through CDC grant support.
The New Hampshire Rare Disease Advisory Council presented its annual report to the oversight committee, highlighting a newly passed newborn-screening law, outreach and a new genomic testing initiative for unexpected deaths in children and young adults.
"I just wanted to give you a little bit of an overview, of the rare disease advisory council, and and really starting with rare diseases in general... New Hampshire was the first rare disease advisory council in New England," said Dr.…
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