Metachromatic Leukodystrophy Resources

If you or someone you know has MLD (Metachromatic Leukodystrophy) it is helpful to get as much information as possible about the disorder. Talk with your doctor about other sources of information, including other healthcare professionals who can help you learn more about MLD (Metachromatic Leukodystrophy) and how it may impact you and your family. You can also contact the following organizations and foundations for more information about MLD (Metachromatic Leukodystrophy).

BraveCommunity.com is intended for residents of the United States. Because rare diseases impact a small number of patients, the community of support and education often spans the collective efforts and experiences of patients, families, medical professionals, and researchers across the world. The following links may provide education about rare diseases that may be helpful to you. These sites may be subject to policies, regulations or laws that are different from those in the United States. Shire HGT is not responsible for the content on these sites except for those sites operated by Shire HGT. They may have different policies (including privacy policies) than BraveCommunity.com and may contain information that reflect local standards, including medical standards of care different from those in the U.S. You should discuss any information you receive on the internet about medical care with your doctor before making medical decisions.

U.S. Resources

Angel’s Hands Foundation
11152 South Sunup Way
South Jordan, UT 84095
Phone: 801-280-1801
info@angelshands.org
www.angelshands.org
Ben's Friends
www.bensfriends.org
Children's Rare Disease Network
24701 La Plaza
Suite 201
Dana Point, CA 92629
Phone: 949-305-8656
info@rareproject.org
www.crdnetwork.org
Genetic Alliance
4301 Connecticut Ave NW
Suite 404
Washington, DC 20008-2369
Phone: 202-966-5557
www.geneticalliance.org
MLD Foundation
21345 Miles Drive
West Linn, OR 97068-2878
www.mldfoundation.org
National Organization for Rare Disorders (NORD)
55 Kenosia Ave
PO Box 1968
Danbury, CT 06813-1968
Phone: 203-744-0100
Toll free: 800-999-6673 (voice mail only)
www.rarediseases.org
Patients Like Me
www.patientslikeme.com
Rare Project
www.rareproject.org
The Evanosky Foundation
PO Box 9234
Naperville, IL 60567
www.evanoskyfoundation.org
The Myelin Project
1400 Wallace Boulevard
Suite 258
Amarillo, TX 79106
www.myelin.org
United Leukodystrophy Foundation
2304 Highland Drive
Sycamore, IL 60178
www.ulf.org

International Resources

Australian Leukodystrophy Support Group Inc.
10 Mitchell Street
Mentone Victoria 3194
Australia
www.alds.org.au
Canadian Organization for Rare Disorders (CORD)
www.cord.ca
Children Living with Inherited Metabolic Diseases (CLIMB)
CLIMB Building
176 Nantwich Road, CW2 6BG
United Kingdom
www.climb.org.uk
ELA - European Leukodystrophy Association
Association Européenne contre les Leucodystrophies
53 cours Léopold, BP 267 – 54005, NANCY CEDEX
France
www.ela-asso.com
(in French)
EURODIS - Rare Diseases Europe
www.eurodis.org
Hope Foundation
141 Wortley Road
London, Ontario, Canada
N6C 3P4
www.bethanyshope.org

Publications

Here is a short bibliography of a few examples of published articles about MLD (Metachromatic Leukodystrophy) to read or to share with your doctor. You can use the Searching Medical Literature tutorial to learn how to search for the latest articles in medical journals, and be sure to ask your doctor for any new publications. This list is not a complete list of available published information about these topics.

  • Gieselmann V, Polten A, Kreysing J, von Figura K. Molecular genetics of metachromatic leukodystrophy. J Inherit Metab Dis. 1994;17(4):500-509. [PubMed ID 7967499]
  • Hyde TM, Ziegler JC, Weinberger DR. Psychiatric disturbances in metachromatic leukodystrophy. Insights into the neurobiology of psychosis. Arch Neurol. 1992;49(4):401-406. [PubMed ID 1532712]