Resources- Specific Diagnosis Card Catalog- Leukodystrophy
Types of Leukodystophy: Adrenoleukodystrophy, Alexander Disease, Canavan Disease, Krabbes Disease, Metachromatic Leukodystrophy, and Refsum's Disease
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
Web: 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
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)
Links
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
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