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Committee hears bill to add metachromatic leukodystrophy to Minnesota newborn screening panel
Summary
A bill (HF1029) to add metachromatic leukodystrophy, a rare but treatable neurodegenerative disorder, to Minnesota's newborn screening panel was presented to the House Health Finance and Policy Committee. Family members and clinicians urged early detection so presymptomatic children can access available therapies.
Representative Torkelson presented House File 1029 to the Health Finance and Policy Committee on March 12, urging the panel to add metachromatic leukodystrophy (MLD) to Minnesota's newborn screening panel.
The bill's supporters said early identification through newborn screening would allow presymptomatic infants to receive recently developed treatments. “No child should ever suffer the way Chloe did,” Erica Barnes testified, describing her daughter's diagnosis and death from MLD and asking the…
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