Leukodystrophy

Who to Contact
Where to Go to Chat with Others
Learn More About It
Web Sites
Search Google for "Leukodystrophy"

Who to Contact

United Leukodystrophy Foundation (ULF)
2304 Highland Drive
Sycamore IL 60718
(815) 895-3211
(815) 895-2432 (fax)
(800) 728-5483
E-mail: ulf@tbcnet.com
Website: http://www.ulf.org/

This is a nonprofit, voluntary health organization dedicated to providing patients and their families with information about their disease. In addition, it provides assistance in identifying sources of medical care, social services, and genetic counseling; establishing a communication network among families; increasing public awareness; acting as an information source for health care providers; and promoting and supporting research into causes, treatments, and prevention of the leukodystrophies. The ULF is supported solely by donations.

Where to Go to Chat with Others

• Yahoo list of leukodystrophy discussion groups

• Inborn Errors of Metabolism Discussion Group
  
  
• MLD Support

Learn More About It

• Alexander Disease
  From Online Mendelian Inheritance in Man (OMIM)

• Canavan Disease
  From Online Mendelian Inheritance in Man (OMIM)

• Krabbe Disease
  From Online Mendelian Inheritance in Man (OMIM)

• Krabbes Disease: Basic Information
  From the Krabbes Disease Homepage

• Metachromatic Leukodystrophy, Late Infantile
  From Online Mendelian Inheritance in Man (OMIM)

• Metachromatic Leukodystrophy: What is it?
   
• Refsum's Disease, Infantile Form
  From Online Mendelian Inheritance in Man (OMIM)

Web Sites

• Krabbes Disease Homepage
  
  
• Krabbes Kids

• Myelin Project

• United Leukodystrophy Foundation (ULF)
  See description above.
   
• Bethanys Hope Foundation
  Information about Metachromatic Leukodystrophy
   
• Brianne's LEAP of Hope
  Leukodystrophy Education and Awareness Project
   
• Hunter's Hope
  Krabbe Leukodystrophy
   
• The Stennis Foundation for MLD
  Metachromatic Leukodystrophy
   
• MLD Family
  Metachromatic Leukodystrophy