NORD's
Washington Office
 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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"Resources" on this report.
Copyright 1987, 1990, 1996, 1998, 1999, 2007
Synonyms of Alagille Syndrome
- AHD
- Arteriohepatic Dysplasia
- Cholestasis with Peripheral Pulmonary Stenosis
- Syndromatic Hepatic Ductular Hypoplasia
Disorder Subdivisions
General Discussion
Alagille syndrome is a genetic liver disorder usually present at birth. It is characterized by insufficient passage of bile due to a lower than normal number of bile ducts inside the liver. In some cases, the child may be born with no bile ducts. Major symptoms include prolonged yellow skin discoloration (jaundice), eye and heart structure anomalies, abnormally shaped vertebrae of the spine, compression of nerve space inside the lower spine, an absence of deep tendon reflexes, mental deficiency, facial and kidney (renal) abnormalities, shortened fingers, and pancreatic insufficiency.
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Organizations related to Alagille Syndrome
- Alagille Syndrome Alliance
10500 SW Starr Drive
Tualatin OR 97062
Phone #: 503-885-0455
800 #: --
e-mail: alagille@alagille.org
Home page: http://www.alagille.org
- American Liver Foundation
75 Maiden Lane
Suite 603
New York NY 10038
Phone #: 212-668-1000
800 #: 800-465-4837
e-mail: info@liverfoundation.org
Home page: http://www.liverfoundation.org
- Arc (a national organization on mental retardation)
1010 Wayne Ave
Suite 650
Silver Spring MD 20910
Phone #: 301-565-3842
800 #: 800-433-5255
e-mail: info@thearc.org
Home page: http://www.thearc.org/
- Children's Liver Alliance
None
None IN None
Phone #: N/A
800 #: --
e-mail: mail@liverkids.org.au
Home page: http://www.liverkids.org.au
- Cholestatic Liver Disease Consortium (CLiC)
c/o Joan Hines, The Children's Hospital
13123 E. 16th Ave.
Suite B290
Aurora CO 80045
Phone #: 720-777-2598
800 #: N/A
e-mail: hines.joan@tchden.org
Home page: http://www.rarediseasesnetwork.org/clic
- Digestive Disease National Coalition
507 Capitol Court, NE
Suite 200
Washington DC 20002
Phone #: 202-544-7497
800 #: --
e-mail: ddnc@hmcw.org
Home page: http://www.ddnc.org
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: ordr@od.nih.gov
Home page: http://rarediseases.info.nih.gov/Default.aspx
- MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay WI 54301-1243
Phone #: 920-336-5333
800 #: 877-336-5333
e-mail: mums@netnet.net
Home page: http://www.netnet.net/mums/
- Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone #: 310-264-0826
800 #: N/A
e-mail: getinfo@madisonsfoundation.org
Home page: http://www.madisonsfoundation.org
- NIH/National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda MD 20892-3570
Phone #: 301-654-3810
800 #: 800-891-5389
e-mail: nddic@info.niddk.nih.gov
Home page: http://www.niddk.nih.gov
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