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Legislature hears FSGS patients and researchers urge more screening and drug development
Summary
A University of Michigan pediatric nephrologist and a mother and teen living with focal segmental glomerulosclerosis told the House Health Policy Committee about diagnostic delays, limited treatments and the need for research and telehealth access.
Legislators heard personal testimony and scientific context Tuesday about focal segmental glomerulosclerosis, or FSGS, a rare kidney disease that can cause protein loss, swelling and progression to end-stage kidney disease.
Zubin Modi, a pediatric nephrologist and director of the Pediatric Nephrology Research Program at the University of Michigan, told the House Health Policy Committee that ‘‘there are currently no FDA approved therapies for this disease’’ and described the condition’s course and…
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