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COMMUNITY and CONNECTION
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HCU - Homocystinuria
MSUD - Maple Syrup Urine Disorder
PKU - Phenylketonuria
RESEARCH
SUPPORT AND SUSTAIN
TYR - Tyrosinemia Type
UCD - Urea Cycle Disorder
The PKU Patient Registry: Development of a patient-driven registry and initial outcomes
(English)
Author(s):
Lauren Youngborg, Christine S. Brown, Eileen M. Blakely, Olaf Bodamer, Rhonda Connolly, Kathryn D. Moseley, Elaina Jurecki, Kelsey McQueen, Susan A. Berry
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Description:
Keywords: Phenylketonuria PKU Phenylalanine Patient registry Natural history Rare disease registry Patient-reported outcomes Inborn error of metabolism
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Connaissances sur les maladies rares et les médicaments orphelins
(English)
Author(s):
OrphaNet
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Description:
Aucune maladie n'est trop rare pour ne pas mériter attention
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