Genetic Disorders Fact Sheets for Parents
Content provided by Screening, Technology, and Research in Genetics (Star-G).
PKU Food List Booklet
Pocket-sized comprehensive food list for patients with Phenylketonuria. This self-explanatory book on the Phenylalanine (Phe) Exchange system contains information on foods found in the Amino-Acid Analyzer, a computer program used by dietitians to analyze Phe content. Information on household measurements and serving sizes, calories, grams of protein, Phe content, and Phe exchanges are provided in a ledger format. Also included are sub-lists of common foods, room to compile a favorite food log and keep notes, and helpful resources — a great quick reference of a wide variety of foods.
MSUD Food List Booklet
Pocket-sized comprehensive food list for patients with Maple Syrup Urine Disease. This self-explanatory book on the Leucine (LEU) Exchange System contains information on foods found in the Amino-Acid Analyzer, a computer program used by dietitians to analyze Leu content. Information on household measurements and serving sizes, calories, grams of protein, Leu content, and Leu exchanges are provided in a ledger format. Also included are sub-lists of common foods, formatted pages to compile a favorite food log and keep notes, and helpful resources. This is a great quick reference for a wide variety of foods.
Southeast Regional Network (SERN) Consumers
The Southeast Regional Network (SERN) is a federally-funded initiative dedicated to improving the health and quality of life of individuals with heritable disorders. Providing patients and families with up-to-date, relevant information about newborn screening (NBS) and genetics is an important goal of SERN. Information and resources specific to patients with genetic disorders and their families are available on the website.
Metabolic Camp
The Annual Metabolic Camp at Emory University was developed by Rani H. Singh, PhD, RD, to provide a supportive environment for girls and women with PKU and MSUD. A holistic approach to managing these disorders is emphasized, with particular focus on nutrition, genetics, and overall well-being, to arrest the disease process and minimize the instances of miscarriages and severe birth defects that are high in this population.