Educational resources and tools currently avalable to support nutrition management of UCDs. A toolkit containg additional guidance and resources specific to these guidelines is in development. 

Learning objectives for individuals with UCDs and their families include:

• Understand the basic metabolism of the urea cycle and the resulting consequence of elevated ammonia
• Understand the importance of appropriate dietary protein intake
• Recognize the need to monitor signs and symptoms of metabolic decompensation
• Recognize the need for frequent contact with appropriate healthcare providers, especially the importance of seeking medical advice during illness
• Acquire skills needed to implement treatment recommendations
• Realize the importance of strict adherence to treatment recommendations

Resources for individuals with UCDs and theri families include:

• National Urea Cycle Disorders Foundation: https://nucdf.org/
• Connecting Families UCD Foundation: https://www.ucdfamily.org/
• National Organization for Rare Disorders (NORD): a unique nonprofit federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, and service.
• Urea Cycle Disorders Consortium Includes resources for patients and families as well as newsletters for patients and families outlining current UCD research from the consortium: https://ucdc.rarediseasesnetwork.org/
• A compilation of resources for individuals with UCDs and their families developed by NUCDF is available at: https://nucdf.org/resources/

• GeneReviews: a collection of expertauthored, peer-reviewed disease descriptions that apply genetic test to the diagnosis, management, and genetic counseling of patients and families with specific inherited conditions. Developed under the National Center for Biotechnology Information (NCBI), a division of the National Library of Medicine (NLM) at the National Institutes of Health (NIH). A GeneReview is available for most UCDs and those available are listed below:
  • Urea cycle disorders overview: https://www.ncbi.nlm.nih.gov/books/NBK1217/
  • Ornithine Transcarbamylase Deficiency: https://www.ncbi.nlm.nih.gov/books/NBK154378/
  • Citrin Deficiency: https://www.ncbi.nlm.nih.gov/books/NBK1181/
  • Citrullinemia Type 1: https://www.ncbi.nlm.nih.gov/books/NBK1458/
  • Argininosuccinate Lyase Deficiency: https://www.ncbi.nlm.nih.gov/books/NBK51784/
  • Arginase Deficiency: https://www.ncbi.nlm.nih.gov/books/NBK1159/
  • Hyperornithinemia-Hyperammonemia-Homocitrullinuria Syndrome: https://www.ncbi.nlm.nih.gov/books/NBK97260/
  • Lysinuric Protein Intolerance: https://www.ncbi.nlm.nih.gov/books/NBK1361/
  • Gyrate Atrophy: https://www.ncbi.nlm.nih.gov/books/NBK557759/
• ACMG ACT Sheets: algorithms available for UCD conditions identified through newborn screening. Available for: Argininemia, citrullinemia type 1, citrin deficiency, argininosuccinic aciduria, and decreased citrulline: https://www.acmg.net/ACMG/MedicalGenetics-Practice-Resources/ACT_Sheets_and_Algorithms.aspxv
• Urea Cycle Disorders Consortium: https://ucdc.rarediseasesnetwork.org/resources/researchersclinicians
• National Urea Cycle Disorders Foundation (NUCDF) ECHO Clinician Education Series- a series of introductory educational videos for providers who may not encounter UCDs frequently: https://nucdf.org/about-ucd/echo-clinician-education-series-old.html
• Additional clinical resources available to GMDI members: https://www.gmdi.org/