Leukodystrophy


United Leukodystrophy Foundation
2304 Highland Dr., Sycamore, IL 60178
Phone: 800.728.5483
Fax: 815.895.2432
Web Site: www.ulf.org
E-mail: ulf@ceet.niu.edu
Index of conditions (listed above), Information in Spanish, French, German
 
Adrenoleukodystrophy fact sheet, Sept 1997, National Institutes of Health, Bethesda, MD
 
Pelizaeus-Merzbacher Support Group
209-211 City Road, London EC1V 1JN
Phone: 020 7608 8700
Fax: 020 7608 8701
Minicom 020 7608 8702
Helpline 0808 808 3555 Freephone for parents and families (10am-4pm, Mon-Fri)
E-mail: info@cafamily.org.uk
Web Site: www.cafamily.org.uk/Direct/p15.html
 
Pelizaeus-Merzbacher Disease Support Group, Indianapolis, Indiana, E-mail:  daviau1@juno.co Newsletter, Annual PMD Family Conference
 
PMD Foundation, (Pelizaeus-Merzbacher Disease), 333 Homestead Avenue, Haddonfield, NJ 08033 Phone: 856.795.1539

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:

Teaching Activities (Lorenzo's Oil)


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

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Link that takes you to the Genetic Support Groups  Link that takes you to the Genetic Professional Home Page  Link that takes you to the Genetics Education Center Home

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University of Kansas Medical Center © 1995-2012
Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu


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