Nutrition and Healthcare Resources

UCD Guide for New Families - Easy to understand booklet that explains the basics of urea cycle disorders.

New! Educator's Guide to UCD - Explains the basics of UCD and effects on school performance for teachers and school personnel

  • Email us at CureUCD{Insert @ sign}nucdf.org to request a copy (To discourage spam, we disguised the email address -remove the brackets and insert the @ sign between CureUCD and nucdf.org)

NUCDF Research Briefs:

Sample NUCDF Newsletter: If you would like to receive our NUCDF Newsletters, please consider becoming an NUCDF member (membership is free!).

List of Low-Protein Food and Formula Suppliers - includes information on low protein food and formula suppliers, as well as vendors of products that make low protein cooking easier and low protein cookbooks.  .pdf document available here

State Laws and Policies on Food and Formula Coverage
Accommodating Special Dietary Needs in the School Setting: pdf document outlining requirements for accommodation of special needs at school.

Care Notebooks - The Care Notebooks offer templates and forms families can fill in to help keep track of their child's healthcare information. Families can use these pages to keep track of appointments, medications, diets, lab results, instructions for family caregivers and respite workers, contact information of their metabolic team and pediatrician, resources, and track their child's milestones and care needs.

Care Notebook Resource 1

Care Notebook Resource 2

Emergency Letters and Personalized Information for Clinic and Hospital Visits:

Getting to Know Me - We love this personalized form that introduces your child to healthcare professionals.  

My Healthcare Passport - Comprehensive information about your child and their special needs for hospital and clinic visits.

Mi Pasaporte de Salud - Este documento personalizado puede ser llenado con información importante sobre su hijo que puede ayudar a los profesionales médicos a proporcionar un mejor apoyo durante las visitas al hospital o clínica.

Sample Emergency Letter - edit and insert emergency instructions from your metabolic team.

In Case of Emergency Form

Emergency Information Wallet Card (to carry or attach to carseats, etc.)

Preparing for Time Away from Home (Planning for Overnights/PlaydaysCamp/Vacations/Visits)

Planning Worksheets - When preparing for a first visit away from home or to an unfamiliar place, these worksheets will help you think of things you may not have considered.

Personal Medical Identification and Jewelry

Nutrient Database - Enter any food to find values including protein, fat carbohydrate and calorie content as well as amino acid and vitamin content for most foods. Analyze your recipes and save a favorite foods list.

Cambrooke Foods - Low-protein foods and recipes.

Dietary Specialties Products - Low-protein food supplier.
Taste Connections - Low-Protein mixes and recipes.
NUCDF Recipe Book - Low-protein recipes for UCD families. Contact info@nucdf.org

Maternal and Child Health Library - A virtual guide to maternal and child health information. It offers a wide variety of electronic resources, including databases, publications, resource lists, Web links, the MCH Alert (electronic newsletter), state MediCaid rules, and other resources developed for health professionals, families, and consumers.

 

 

UCD Family and Physician

 

“Loads of compliments for your organization and your website: it’s clear, honest, positive as possible and it really gives us a good start in the (for us) strange world of parents with a UCD diagnosed child.”

N.J., Netherlands