Metabolic Patient Resources

 

Medical Foods Resources

Low Protein Foods 

  1. Cambrooke
  2. Zoia Pharma
  3. Flavis
  4. PKU Perspectives
  5. Mevalia
  6. 1-2-3 Let’s Eat Low Protein Foods
  7. Low Protein Grocery Store Lists

Metabolic Formulas 

  1. Nutricia
  2. Cambrooke
  3. Abbott
  4. Vitaflo
  5. Nexus
  6. Relief Therapeutics

Low Protein Food Trackers and Recipes 

  1. How Much Phe?
  2. Metabolic Diet App
  3. Go Low Pro
  4. Flok
  5. Cook for Love
  6. Cambrooke Recipes
  7. Nutricia Recipes
  8. Low Protein Cookery for PKU by Virginia Schuett
  9. The FOod Kitchen by Claire Held and OHSU Bionutrition
 

 

Metabolic Patient Organizations

  1. LA Metabolic Disorders Coalition
  2. National PKU Alliance
  3. PKU News
  4. Southeast Regional Genetics Network
  5. National Organizations for Rare Disorders
  6. Organic Acidemia Association
  7. Fatty Acid Oxidation Disorders Family Support Group
  8. HCU Network America
  9. National Urea Cycles Disorders Foundation
  10. Connecting Families UCD Foundation
  11. Tyrosinemia Society
  12. MSUD Family Support Group
  13. Association for Creatine Deficiencies
  14. Association for Glycogen Storage Diseases

Coping & Healing 

  1. Developmental and Mental Health Resources
  2. Grief Support

Metabolic Camps

  1. Emory Metabolic Camp - Decatur, Georgia
    Metabolic Camp offers a holistic approach to the nutrition management of PKU and MSUD–empowering females ages 12 and older to make healthy choices and take charge of their futures as they live, learn, and play in a supportive camp environment.
     
  2. Camp PHEver - Burton, TX
    Six day residential camp during the summer for children and teens ages 6 to 18 years old diagnosed with phenylketonuria and for their siblings.
     
  3. PKU Family Camp - Oregon, Washington
    Virtual summer camp for infants, children and adults diagnosed with PKU and allied metabolic disorders and for their families and friends.