Management
Guidelines
Portal
Nutrition Management Guidelines, Consumer Summary Sheets, and Consumer FAQs

Nutrition Management Guidelines and Toolkits, based on our rigorous DNDF Methodology, are intended for Clinicians and Professionals.

Consumer Summary Sheets and Consumer Frequently Asked Questions(FAQs), based on our rigorous Nutrition Management Guidelines and Toolkits, are written with Families and Consumers in mind.

The following disorders were selected by the workgroups for initial guideline and toolkit development:

Disorder Guidelines Toolkit Consumer Summary Sheet Consumer FAQ
MSUD
(Maple Syrup Urine Disease)
Amino Acidemia
Available Now Available Now
PKU
(Phenylketonuria)
Amino Acidemia
Available Now Available Now * Updated 2022 for Pegvaliase
PROP
(Propionic Acidemia)
Organic Acidemia
Available Now Available Now
VLCAD
(Very Long-Chain Acyl-CoA Dehydrogenase Deficiency)
Fatty Acid Oxidation Disorder
Available Now Available Now
MCAD
(Medium-chain acyl-CoA dehydrogenase)Fatty Acid Oxidation Disorder
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CIT
(Citrullinemia)
Urea Cycle Disorder
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ASA
(Argininosuccinic aciduria)
Urea Cycle Disorder
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ARG
(Argininemia)
Urea Cycle Disorder
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