local treatment centers for maple syrup urine disease

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STAR-G Genetic Fact Sheets for MSUD (in English and Spanish): concise, but accurate fact sheets that are in a downloadable format.

#Local treatment centers for maple syrup urine disease pdf

Parents’ Guide to MSUD (2005): a printer-friendly booklet on MSUD, available as a PDF for downloading, prepared by the California Department of Health Services Newborn Screening Program.Developed by the Minnesota Department of Health. Available in both English (2011) and Spanish (2009). Next Steps After Diagnosis: Maple Syrup Urine Disease (MSUD): a set of questions and answers that briefly describes the inheritance, symptoms, treatment and other aspects of the disorder.Genetic Home References : provides a brief overview of this disorder and genetic inheritance, with a comprehensive list of links to many other resources.Available to health care professionals and to families from Abbott Nutrition, a division of Abbott Laboratories, Inc., PO Box 1317, Columbus, OH 43216, 1-80 FREE. A Guide for the Family of a Child with Maple Syrup Urine Disease (2009): a guide in English and Spanish, providing a clear definition of the disorder and treatment, appropriate for the family with a newly diagnosed infant.Many advocacy issues surrounding coverage for medical food and other treatment modalities are as applicable to MSUD as to PKU. National PKU Alliance: a non-profit representing a collaboration of phenyketonuria (PKU) community members joining together as a national voice and supporting local efforts to raise PKU awareness and driving advocacy and education, while ultimately looking for a cure.NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. National Organization for Rare Disorders (NORD): a unique non-profit federation of voluntary health organizations dedicated to helping people with rare 'orphan' diseases and assisting the organizations that serve them.Past newsletters are available and indexed by topic. Offers online resources for families and professionals, a newsletter, and educational symposiums. MSUD Family Support Group: A non-profit 501(c)(3) organization dedicated to support, education and advocacy for persons with MSUD.The network is a dynamic and growing open space for shared resources, creative tools, and innovative programs. Genetic Alliance’s network includes more than 1,000 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations.

Genetic Alliance: A non-profit health advocacy organization.

Their mission is to provide Metabolic Disease specific information, advice and support to children, young people, adults, families and professionals in the United Kingdom and to provide information and support to families worldwide, to fund educational and primary research programs and to investigate treatments and medical services.

#Local treatment centers for maple syrup urine disease free

CLIMB (Children Living with Inherited Metabolic Disorders): the United Kingdom's provider of free metabolic disease information to young people, adults, families, professionals and other interested groups.

RESOURCES FOR MAPLE SYRUP URINE DISEASE (MSUD)

Appendix A: Recommendation Rating Definitions.

T.10 Delphi Round 1 - Lab Test Frequency for Medically Stable Individuals.

T.9 Findings from Delphi Survey Round 2.

T.8 Findings from Delphi Survey Round 1.

T.7 Recommendations for the Nutritional Monitoring of Individuals with MSUD.

T.6 Nutrition Problem Identification for MSUD based on the International Dietetics and Nutrition Terminology Reference Manual, 3rd Edition.

T.5 Protein Recommendations during Pregnancy for MSUD.

T.4 Recommended Daily Nutrient Intakes of BCAA, PRO, ENERGY and Fluids for Infants, Children and Adults with MSUD (when well).

T.3 Nutrient Recommended Intake and Sources in the Dietary Treatment of Well Individuals with MSUD.T.2 Laboratory and Clinical Findings for Classical MSUD.Benefits and Harms of Implementing the Recommendations.Learning Objectives for Patients/Families.Nutrition interventions and liver transplantation Nutrition interventions during pregnancy, at delivery and during the postpartum period Nutrition management and Branched chain amino acid (BCAA) blood concentrations Nutrition interventions during illness, trauma or surgery Comparison of nutrient intake to established standards.Laboratory Findings, Medical Tests and Procedures.Biochemical Pathway and Nutrition Treatment Rationale.