OTHER SITES OF INTEREST
(always updating web addresses-may need to cut/paste URL another page)
--List of clinics treating metabolic disorders in the USA.
Mead Johnson
http://www.meadjohnson.com/app/iwp/HCP/Content2.do?dm=mj&id=/HCP_Home/Provider_Specialties/Metabolic_Providers/Directory&iwpst=HCP&ls=1&csred=1
--Genetics Education Center University of Kansas Medical Center
(Lots of good information and links to others sites)
http://www.kumc.edu/gec/ http://www.kumc.edu/gec/support/#t
--Health on the net Improving the quality of healthcare information on the Net. Good resources to check out.
http://www.hon.ch/
--National Library of Medicine: Services and links from the NLM.
http://www.nlm.nih.gov
--National Center for Biotechnology Information: Home of NCBI, National Library of Medicine, and NIH.
http://www.ncbi.nlm.nih.gov/
--The National Newborn Screening and Genetics Resource Center (NNSGRC)
http://genes-r-us.uthscsa.edu/index.htm
A cooperative agreement between the Maternal and Child Health Bureau (MCHB), Genetic Services Branch and the University of Texas Health Science Center at San Antonio (UTHSCSA), Department of Pediatrics. The NNSGRC is established on the principle that accurate genetic information and competent genetic services should be provided to all individuals.
---Patient Advocate Foundation
753 Thimble Shoals Blvd, Suite B
Newport News, VA 23606
Phone: 800-532-5274 Fax: 757-873-8999
e-mail: help@patientadvocate.org
http://www.patientadvocate.org/
Even though it has several references to cancer, the same problems pertain to rare disorders (insurance, appeals process, job discrimination, etc).
--PKU-INFO.ORG
An interesting site with lots of international links of interest
http://www.pku-info.org
--Reimbursement for Medical Foods for Inborn Errors of Metabolism (RE9412)
Pediatrics Volume 93, Number 5 May 1994, p 860
http://aappolicy.aappublications.org/cgi/reprint/pediatrics;93/5/860.pdf http://www.aap.org/policy/00205.html (no longer working?)
--Quackwatch
Your Guide to Health Fraud, Quackery, and Intelligent Decisions
http://www.quackwatch.com/
--Texas Newborn Screening Program
Contains lots of valuable information that is useful for tyrosinemia families.
Phenylketonuria Homepage:
http://www.dshs.state.tx.us/newborn/pku.shtm
--USDA Nutrient Database
http://www.nal.usda.gov/fnic/foodcomp/search/
This interface allows simple searches. Enter one keyword which best describes your food.
--Nutrient Database
http://www.nutritiondata.com/ Use ND's Nutrient Search Tool to find the foods that are lowest in carbohydrates, highest in protein, or that match any other dietary restrictions or goals.
--University of Washington clinics
http://depts.washington.edu/pku/pku.html http://depts.washington.edu/pku/sitemap.html http://depts.washington.edu/tyros/
excellent resources
Materials for use with children with PKU
Curriculum-teaching skills
updated June 19, 2008
