Leukodystrophy

• Adrenoleukodystrophy (ALD)
• Alexanders Disease
• CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts & Leukoencephalopathy)
• Canavan Disease (Spongy Degeneration)
• Cerebrotendinous Xanthomatosis (CTX)
• Globoid Cell (Krabbes) Leukodystrophy
• Metachromatic Leukodystrophy (MLD)
• Neonatal ALD
• Ovarioleukodystrophy
• Pelizaeus-Merzbacher Disease
• Refsum Disease
• van der Knaap Syndrome
• Zellweger Syndrome

Associazione Italiana Leucodistrofie Unite, ALD, Italy

The Canavan Research Fund (Canavan Disease)
16 School Street, Rye, NY 10580
Phone: 914. 921.6924
Fax: 914.921.2424
Web site: www.canavan.org

Association Européenne contre les Leucodystrophies (ELA), European Leukodystrophy Association
53 cours Léopold - BP 267 - 54005, France
Phone: 333 83 30 93 34
Fax: 333 83 30 00 68
E-mail: ela@ela-asso.com
Web site: www.ela-asso.com

Hunter's Hope (Krabbe and other leukodystrophies)
P.O. Box 643, Orchard Park, NY 14127
Phone: 716.667.1200
Fax: 716.667.1212
Web site: www.huntershope.org

MLD Foundation Metachromatic Leukodystrophy Foundation (MLD)
21345 Miles Drive, West Linn, OR 97068
Phone: 1+ 503-656-4808 or 800-617-8387
Fax: 1+ 503-212-0159
Web site: www.MLDfoundation.org
E-mail: info@mldfoundation.org

Also See:

• National organizations information on genetic conditions or birth defects
• Information for Siblings and Family Members
• Adrenoleukodystrophy, GeneClinics
• Adrenoleukodystrophy, National Organization for Rare Diseases
• Infantile Refsum Disease, includes information on Zellweger Syndrome and peroxisomal diseases
• Pelizaeus-Merzbacher Disease (PMD), Australia
• Pelizaeus-Merzbachers sjukdom, Socialstyrelsen, Stockholm
• The Myelin Project, site from father in the movie Lorenzo's Oil
  
• Neuro-metabolic resources
• Zellweger Syndrome Page (by family)
• Zellweger Syndrome, NCBI
• Zellweger Syndrome, National Institute of Neurological Disorders and Stroke, National Institutes of Health

Teaching Activities (Lorenzo's Oil)

• Lorenzo's Oil, Selective Bibliography, NCI-Frederick Scientific Library
• Medicine and the Movies: Lorenzo's Oil at Century's End, A H Jones, Ann Intern Med. 2000;133:567-571
• A happier sequel to Lorenzo's Oil? RJA Wanders, Dept Pediatrics, Univ. Amsterdam, Nature Medicine, Nov 1998, Vol 4, No.11, pp1245-46
• The clinical course of childhood and adolescent adrenoleukodystrophy before and after Lorenzo's oil, Y Suzuki, A Imamura, N Shimozawa and N Kondo, Brain and Development, Vol 23, Issue 1, Feb 2001, pp 30-33 Abstract, PubMed
• The mixed legacy of 'Lorenzo's Oil' Film, May 08, 2001, C Snowbeck, Post-Gazette [immediate impact was alienation between parents and researchers, but today, research advances on the mysterious disease]
• Learning Guide to: Lorenzo's Oil, Teach with Movies®

To locate a genetic counselor or clinical geneticist in your area:

• Professional Genetics Societies
• Genetic clinics, centers, departments

Revised January 23, 2009

   

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