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Families and clinicians press lawmakers on Prader-Willi care, waivers and treatments
Summary
Medical experts, family advocates and biotech representatives spoke to the committee about Prader-Willi syndrome (PWS), urging better waiver access, more coordinated care, and noting a recent FDA approval for a hyperphagia therapy; families detailed lost Medicaid coverage and called for policy fixes.
Dr. Michael Gambello (Emory University) told the committee Prader-Willi syndrome (PWS) is a rare genetic disorder that disrupts hypothalamic function, causing infancy hypotonia and, later, an insatiable appetite (hyperphagia) that can lead to severe obesity and medical complications. He emphasized the need for coordinated specialty care across endocrinology, behavioral health, nutrition and social…
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