| TheClinic for Special Children (CSC) is a non-profit diagnostic and primarypediatric medical service for children with inherited metabolic disorders.It is located near Strasburg, Lancaster County, Pennsylvania.
Click here for more information on their benefit auctions. |
| MSUD Research Foundation | The MSUD Research Foundation is a non-profit organization committed to promote the need for ongoing research of MSUD in an effort to ensure all families are afforded the technology, services, education and treatment available to enable early detection and to successfully manage MSUD. It is maintained by the Kohl family who have a child with MSUD. |
National Coalition
for PKU & Allied Disorders | TheNational Coalition seeks to improve identification, treatment and managementof PKU and Allied Disorders through advocacy, education, support, promotionand support of research, and services complementing and assisting existingsupport groups and organizations |
| Save Babies Through Screening Foundation, Inc. | Save Babies Through Screening is a nonprofit voluntary organizationwhose mission is to improve the lives of babies by preventing mentalretardation and death resulting form disorders detectable through newborn screening. This site is an excellent resource on newborn screening. For information on each state's screening program and for a list of the disorders currently screened in each state, click here. |
Climb
(Children living with inherited metabolic diseases)
| An organization in the United Kingdom founded in 1981 as The Research Trust for Metabolic Diseases in Children with the purpose to ensure the best possible quality of life for children, young people and families affected by metabolic disease and alleviate their suffering with the ultimate aim of prevention and cure. |
ForMyDiet.com
| A great nutritional resource with extensive food lists and good sorting facilities to find protein and leucine values of foods. It includes a values calculator to calculate the values for different serving sizes. Contains low protein recipes and information on specific disorders. There are small appliances available for sale, such as, scales and breadmakers. They are expanding and adding many helpful diet management tools. |
| Nutrition Data | Detailednutritional data on a large number of foods with protein and amino acidlistings on the foods. It allows ways to sort the foods according tovarious categories. An excellent resource for nutritional data for thewhole family. |
| USDA Nutrient Data Lab | Searchthe USDA Nutrient Database for Protein / Leucine info. |
| Metabolic Dietary Disorders Association | The MDDA is a self-help, nonprofit, family support group in Australia. The site provides a comprehensive resource for those with inborn errors of metabolism that are partially controlled by a medically prescribed diet. |
| Foundedto address the special needs and concerns of individuals with Phenylketonuria(PKU) and their families. |
| Newsand Information About Phenylketonuria with much information that pertainsto the MSUD diet. |
| PKU Organization of Illinois | A resource for families in Illinois and around the world dealing with Phenylketonuria. |
| Michigan PKU | Provides information, helpful hints, resources, etc for the Michigan PKU population. |
