ADVOCACY

Access to medical nutrition for phenylketonuria is a significant issue in the United States.

Medical Foods for Inborn Errors of Metabolism: The Critical Need to Improve Patient Access

Genetic Metabolic Dieticians International (GMDI) Position Statement on Medical Foods

Medical Foods for Inborn Errors of Metabolism: History, Current Status, and Critical Need

Without treatment, PKU affects the brain and causes intellectual and developmental disabilities, seizures, mood disorders, and other devastating health consequences.

Please share why access to PKU medical nutrition is important at NutritionEquity.org.

Advocacy Quick Links, Documents, and News:
Patients & Providers for Medical Nutrition Equity
U.S. Senate Phenylketonuria Awareness Day Resolution (2019)
Grassley is Original Co-Sponsor of Medical Nutrition Equity Act (2017)
American College of Medical Genetics (ACMG) Efforts Lead to American Medical Association’s Support of Health Coverage for Medical Food Products

ADVOCACY

Spring 2021 COVID-19 Impact Survey

April 22, 2021

National PKU News and other metabolic disorder organizations are interested in knowing how COVID-19 may have affected your (or your family member’s) access to medical care and treatment for PKU or another Inherited Metabolic Disorders (IMD). If you live in … (read more)

ADVOCACY

SERN Introduces Emergency Toolkit

July 17, 2018

Have you ever been traveling or faced with an emergency situation where you realized you weren’t fully prepared? We’ve all heard that we should be prepared for emergencies but for those with rare genetic disorders, there are some special considerations … (read more)