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Advocates urge expedited review and vote to add Gaucher disease to Pennsylvania newborn screening panel
Summary
Gaucher disease advocates told the House Health Committee they submitted nomination packets twice to add the disorder to Pennsylvania’s newborn screening panel and received denials without an open hearing; they asked lawmakers to either bring House Bill 1652 to a vote or secure a prompt public TAB re‑review.
Advocates for newborn screening for Gaucher disease pressed the Pennsylvania House Health Committee on Friday to force action after what they described as opaque denials by the Department of Health.
"I am a type 1 Gaucher patient, and I also have a teenage son, Eli," Aviva Rosenberg said during testimony for the Gaucher Community Alliance. Rosenberg and other witnesses said they submitted the official nomination packet to the state technical advisory board twice and received denial letters; they said there was no open committee hearing and no dissemination of the nomination packets to the full board.
Rosenberg…
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