Welcome to the Biotinidase Deficiency Family Support Group website. This website is devoted to supporting those affected by biotinidase deficiency. This support group is a non-profit volunteer organization. Our mission is to establish a forum to exchange information about biotinidase deficiency among affected individuals and with medical professionals and to advocate for the inclusion of biotinidase testing in all newborn screening programs.
About this Website
This site was developed in January 2001 and is continually revised and updated. The idea of this website was developed by a group of parents with affected children who found no specific support group for this disorder. With the encouragement of Dr. Barry Wolf, Human Geneticist who discovered biotinidase deficiency, the Farmer and Smith families developed this site with the input of many others. We want your feedback. Please send your comments to contact us.
This is a volunteer effort and no donations are currently taken. Based on the response to this website an official non-profit organization status may be filed for this support group.
Note: Many of the comments found on this website are from parents giving testimonials of their experiences and not necessarily the opinions of a medical doctor. This website should not take the place of discussing any concerns and/or collecting information from a physician.
Special Thanks to Tera Mize, founder of the Save Babies Through Screening Foundation, Inc., Jill Vincent and Terilyn DePaolo for developing this website.
Contact information for Dr. Barry Wolf is as follows:Chair, Department of Medical Genetics
Henry Ford Hospital
2799 West grand Blvd., CFP-4
Detroit, MI 48202
Ph: (313) 916-3116
Packets for Parents
Save Babies Through Screening: PACKETS FOR PARENTS PROGRAM
With the generous support from Pediatrix Screening, Save Babies Through Screening is now able to supply a limited number of screening packets each month to needy families. These packets and the lab testing is completely free to the families who receive them.
|The information contained in this website should not be used as a substitute for the medical care and advice of your doctor. There may be variations in treatment that your doctor may recommend based on individual facts and circumstances.
All rights reserved.