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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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Copyright 1988, 1989, 2004, 2007
Synonyms of Alport Syndrome
- Congenital hereditary hematuria
- Hematuria-Nephropathy Deafness
- Hemorrhagic familial nephritis
- Hemorrhagic Familial Nephritis
- Hereditary Deafness and Nephropathy
- Hereditary Nephritis
- Hereditary Nephritis With Sensory Deafness
- Nephritis and Nerve Deafness, Hereditary
- Nephropathy and Deafness, Hereditary
Disorder Subdivisions
- Autosomal Dominant Alport Syndrome (ADAS)
- Autosomal Recessive Alport Syndrome (ARAS)
- X-Linked Alport Syndrome (XLAS)
General Discussion Alport syndrome is a group of hereditary disorders characterized by progressive deterioration of parts of the kidney known as basement membranes. This deterioration may lead to chronic kidney (renal) disease. Eventually, severe renal failure (end-stage renal disease or ESRD) may develop. Some types of Alport syndrome may also affect vision and hearing. Most cases of Alport syndrome have an X-linked pattern of inheritance.
Organizations related to Alport Syndrome
- Alport Syndrome Foundation
1608 E. Briarwood Terrace
Phoenix AZ 85048-9414
Phone #: 480-460-0621
800 #: N/A
e-mail: info@alportsyndrome.org
Home page: http://www.alportsyndrome.org
- American Kidney Fund, Inc.
6110 Executive Boulevard
Suite 1010 Rockville MD 20852
Phone #: 301-881-3052
800 #: 800-638-8299
e-mail: mdemelo@kidneyfund.org
Home page: http://www.kidneyfund.org
- American Urological Association Foundation
1000 Corporate Blvd.
Linthicum MD 21090
Phone #: 410-689-3700
800 #: 866-746-4282
e-mail: auafoundation@auafoundation.org
Home page: http://www.auafoundation.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: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Home page: http://rarediseases.info.nih.gov/GARD
- Kidney & Urology Foundation of America, Inc.
152 Madison Ave.
Suite 201 New York NY 10016
Phone #: 212-629-9770
800 #: 800-633-6628
e-mail: info@kidneyurology.org
Home page: http://www.kidneyurology.org
- Let Them Hear Foundation
1900 University Avenue, Suite 101
East Palo Alto CA 94303
Phone #: 650-462-3143
800 #: 877-735-2929
e-mail: info@letthemhear.org
Home page: http://www.letthemhear.org
- MUMS 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 Kidney and Urologic Diseases Information Clearinghouse
3 Information Way
Bethesda MD 20892-3580
Phone #: N/A
800 #: 800-891-5390
e-mail: nkudic@info.niddk.nih.gov
Home page: http://www.kidney.niddk.nih.gov/
- National Consortium on Deaf-Blindness (NCDB)
The Teaching Research Institute
Western Oregon University 345 N. Monmouth Ave. Monmouth OR 97361
Phone #: 800-438-9376
800 #: 800-438-9376
e-mail: info@nationaldb.org
Home page: http://www.nationaldb.org
- National Kidney Foundation
30 East 33rd Street
New York NY 10016
Phone #: 212-889-2210
800 #: 800-622-9010
e-mail: info@kidney.org
Home page: http://www.kidney.org
- Perkins School for the Blind
175 North Beacon St.
Watertown MA 02472
Phone #: 617-924-3434
800 #: N/A
e-mail: Info@Perkins.org
Home page: http://www.Perkins.org
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