TRIALS: A Fight for Children with Niemann-Pick Type C, a Fatal Genetic Disease
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Descrição
Children with Niemann-Pick Type C (NPC), their parents and scientists seeking a treatment for this fatal genetic disease. WSJ follows this 6-year fight.
Consensus clinical management guidelines for Niemann-Pick disease type C, Orphanet Journal of Rare Diseases
Parents of kids with Niemann Pick C advocate for adrabetadex
Niemann Pick Disease - an overview
Families plead with FDA for drug to treat Niemann-Pick Disease Type C
Researchers Study Ebola Link to Gene in Rare Disease - WSJ
We know it works': Families, doctor fight move to discontinue medication
At a glance: the largest Niemann-Pick type C1 cohort with 602 patients diagnosed over 15 years
Experimental treatment helps toddler with rare genetic disease - CBS News
Valley boy battling rare disease getting stronger
Research Supported by the Ara Parseghian Medical Research Fund Reaches Important Milestone - Ara Parseghian Medical Research Fund
Families plead with FDA for drug to treat Niemann-Pick Disease Type C
Why are people fighting over a promising treatment for a fatal childhood disease?, Science
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