Metabolic Nutrition Follow-up Program

The Metabolic Nutrition Follow-up Program provides ongoing case management and medical nutrition therapy to patients with the following inherited metabolic disorders identified through Newborn Screening:

  • Phenylketonuria(PKU)
  • Maple Syrup Urine Disease (MSUD)
  • Homocystinuria
  • Tyrosinemia
  • Galactosemia
  • Some disorders of organic acid metabolism

All patients who have any of these disorders and who reside in Maryland are eligible for nutrition follow-up through our program without charge. Monitoring of blood metabolite levels for some disorders can also be done without charge to the patient by the State Laboratories Administration; monitoring of blood metabolite levels for other disorders must be done by outside laboratories and is usually covered by Medical Assistance or private health insurance. The metabolic nutritionists at the Genetics Centers manage the special diets required by the patients with disorders of fatty acid oxidation, the urea cycle and the remaining organic acid disorders, with assistance, as requested, from the nutritionists of the Metabolic Disorders Nutrition Follow-up Program. The comprehensive care of patients with inherited metabolic disorders is coordinated with medical geneticists at the following Genetics Centers:

Johns Hopkins Hospital
Center for Medical Genetics
600 N. Wolfe St. Blalock 1008
Baltimore, Md. 21287-3914
410-955-3071

Children's National Medical Center
Department of Medical Genetics
111 Michigan Ave. N.W.
Washington, DC 20010-2970
202-476-2187

University of Maryland
Division of Human Genetics
737 W. Lombard St., Room 196
Baltimore, Md. 21201-1595
410-328-3335

Medical foods (formulas) and low protein modified food products for the treatment of inherited metabolic disorders are provided by Medical Assistance and Children’s Medical Services for families meeting the financial eligibility requirements of these programs. For patients who have private health insurance, State law, HB 509 (1995), mandates certain insurers to cover both medical foods and low protein modified food products. Self-insured groups are exempt from State insurance mandates.

For more information on the management of the above disorders visit the following websites:

Related Links for Disease Descriptions