Porphyria Links

Office of Rare Diseases, National Institutes of health: Here you can find information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups
Comprehensive Protocol for Evaluating Disorders of Porphyrin Metabolism in Chemically Sensitive Patients:
Cheryl Ann's Porphyria Page: Cheryl Ann's page has a very good collection of links and is the home of Real time Porphyria Chat!
Dr. Moya Smith's Web Site: .
Porphyria, A Patient's Guide, By Dr. Michael Moore : Good information, Very Good Safe and Unsafe Drug listings
Porphyria Chat Page : Post notes to people who have, or suspect they have Porphyria
Mosby Consumer Health - Porphyria : Information on Porphyria
Mara's Porphyria Page : Mara has a wonderful page, which includes Doctor information and some other really neat stuff on Porphyria
The Playground : A place for children of porphyria patients, or children with porphyria or suspected porphyria to talk and meet
Rene's Porphyria Page : Another great porphyria page with lots of information
Aaron's Personal Porphyria Story : The story of how Aaron was diagnosed.
King George II and Porphyria : Was the Madness of King George really something else?
Genetic Metabolic Disorders in Children : A new look at the Porphyira Diagnosis in Children
Neuromuscular Porphyria Site: Information about Porphyria.
Urine Porphyrin's Test: Information on the Urine Porphyrins test done to diagnosis porphyria...including normal ranges.
Erythrocyte Total Porphyrins Test: Information on the Erythrocyte Total Porphyrins Test used to diagnosis EPP
Hed Foundation: Provides cool suits for children of the dark, those with sun sensativities.EPP

Sick Children Links

Parent of Sick and Worn Out Children : Information for parents of children with CFS, MCS, Fibro, etc Welcome to Convomania : A site for children with disabilities and/or serious illnesses Children's Rehabiliation and Development Center at OHSU : Web page of OHSU's CDRC, Where Aaron gets treatment Buddy Board : Lupus Buddy Board, support group and discussions Xeroderma Pigmentosum : Information on Xerderma Pigmatosum Children's Hospital Medical Center : Listing of Children's Hospitals on the Web Protect our Children: Protecting the environment our children live in Nelson's Family Homepage: Preemie Information, othe parenting links The Pediatric Database: Database of Childhood disesase Detecting and treating Children's allergies and Environmental illness's: Dr. Rapp's page on children's allergies and Environmental illness Mitchell family ADD/ADHD links: My friend Janet's great collection of ADD/ADHD links Sniffing out school illness: : someone read this page times.