- What is maple syrup urine disease (MSUD) and what causes it?
- What are the symptoms of MSUD?
- How it is diagnosed?
- What is the prognosis?
- What is the risk for other family members or future babies?
- What treatments/therapies/medications are recommended or available?
- How will my child and our family be impacted?
- If MSUD is a genetic disease, then why is no one else in my family or extended family affected?
- Why does the urine smell like maple syrup?
- Can I breast-feed my baby with MSUD?
- Will my female child with MSUD be able to have children?
Maple Syrup Urine Disease Family Support Group
A non-profit organization that provides information, newsletters and articles, family stories, support services, recipes and formulas, and dietary resources.
Maple Syrup Urine Disease - Information for Parents (STAR-G)
A fact sheet, written by a genetic counselor and reviewed by metabolic and genetic specialists, for families who have received an initial diagnosis of a newborn disorder; Screening, Technology and Research in Genetics.
Maple Syrup Urine Disease (Genetics Home Reference)
Excellent, detailed review of condition for patients and families; sponsored by the U.S. National Library of Medicine.
Newborn Screening Information for Families (NNSGRC)
Information for families about genetic screening. Links to support groups, advocacy groups, and state genetic contacts; newsletters; factsheets; data reports; and publications; National Newborn Screening and Global Resource Center.
Genetics in Primary Care Institute (AAP)
The goal of this site is to increase collaboration in the care of children with known or suspected genetic disorders. It includes health supervision guidelines and other useful resources; represents a collaboration among the Health Resources & Services Administration, the Maternal and Child Health Bureau, and the American Academy of Pediatrics.
Maple Syrup Urine Disease Acute Illness Protocol (NECMP)
Guideline for clinicians treating the sick infant/child who has previously been diagnosed with maple syrup urine disease (MSDU); developed under the direction of Dr. Harvey Levy, Senior Associate in Medicine/Genetics at Children’s Hospital Boston, and Professor of Pediatrics at Harvard Medical School, for the New England Consortium of Metabolic Programs. Click PDF to view the complete protocol.
Emergency Information Form for Individuals with Special Health Care Needs (EIF)
A blank EIF (Emergency Information Form) in Word to download and print from American College of Emergency Physicians. Includes diagnoses and procedures; medications; allergies; signature/consent, for use in emergencies.
What is Maple Syrup Urine Disease (MSUD)? (GSLC)
A brief educational overview of the genetics of maple syrup urine disease (MSUD) from the Genetic Science Learning Center at the University of Utah.
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|Author:||Lynne M Kerr, MD, PhD - 10/2012|
|Content Last Updated:||12/2015|