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.
|
|
|
The National Organization for Rare Disorders (NORD) web site, its databases,
and the contents thereof are copyrighted by NORD. No part of the NORD web
site, databases, or the contents may be copied in any way, including but not
limited to the following: electronically downloading, storing in a retrieval
system, or redistributing for any commercial purposes without the express
written permission of NORD. Permission is hereby granted to print one hard
copy of the information on an individual disease for your personal use,
provided that such content is in no way modified, and the credit for the
source (NORD) and NORD’s copyright notice are included on the printed copy.
Any other electronic reproduction or other printed versions is strictly
prohibited.
The information in NORD's Rare Disease Database is for educational purposes only. It
should never be used for diagnostic or treatment purposes. If you have questions regarding
a medical condition, always seek the advice of your physician or other qualified health
professional. NORD's reports provide a brief overview of rare diseases. For more specific
information, we encourage you to contact your personal physician or the agencies listed as
"Resources" on this report.
Copyright 1984, 1985, 1986, 1987, 1988, 1989, 1990, 1991, 1992, 1995, 1996, 1997, 1998, 1999, 2001, 2002, 2003, 2006, 2007
Synonyms of Amyloidosis
Disorder Subdivisions
- Hereditary Amyloidosis
- Localized Amyloidosis
- Primary Amyloidosis
- Secondary Amyloidosis
General Discussion
Amyloidosis is a group of disorders caused by abnormal folding of proteins leading to fibril formation in one or more body organs, systems or soft tissues. These clumps of protein are called amyloid deposits and the accumulation of amyloid deposits causes the progressive malfunction and eventual failure of the affected organ. Normally, proteins are broken down at about the same rate as they are produced, but these unusually stable amyloid deposits are deposited more rapidly than they can be broken down. The accumulation may be localized in one organ or may be systemic such that several organs are affected.
The different types of systemic amyloidosis are sometimes classified as primary, secondary or hereditary. Primary amyloidosis (also called AL) is the most common type of systemic amyloidosis. It is caused by an abnormal plasma cell in the bone marrow and sometimes occurs with multiple myeloma. Secondary amyloidosis (also called AA) occurs in association with another disease such as rheumatoid arthritis, familial Mediterranean fever or other chronic infection or inflammatory disease. Hereditary amyloidosis is a rare type of amyloidosis that is caused by an abnormal gene. There are several abnormal genes that can cause hereditary amyloidosis, but the most common type of hereditary amyloidosis is called ATTR and caused by a mutations in the TTR gene.
Beta2-microglobulin amyloidosis (Aß2M) is a type of systemic amyloidosis that can occur in patients who have experienced long-term kidney dialysis to remove accumulated impurities or wastes in the blood by mechanical filtration.
.
Organizations related to Amyloidosis
- Amyloidosis Australia, Inc.
17 Victoria Street
Ferntree Gully
Victoria None 3156
Phone #: (+6-1)0-3 9758 2172
800 #: N/A
e-mail: ellen@amyloidosisaustralia.org
Home page: http://www.amyloidosisaustralia.org
- Amyloidosis Foundation
7151 N. Main St.
Suite 208
Clarkston MI 48346
Phone #: 248-922-9610
800 #: 877-269-5643
e-mail: modonnell@amyloidosisresearchfoundation.org
Home page: http://www.amyloidosis.org
- Amyloidosis Support Groups, Inc
232 Orchard Drive
Wood Dale IL 60191
Phone #: 708-987-7711
800 #: 866-404-7539
e-mail: muriel@finkelsupply.com
Home page: http://www.amyloidosissupport.com
- Association Fransaise Contre l'amylose
66, rue Saint Jacques
Immeuble le Pacin II
Marseille Intl 13006
Phone #: 04 -42 -94 90 86
800 #: --
e-mail: N/A
Home page: http://www.amylose.asso.fr
- Cancer.Net
American Society of Clinical Oncology
2318 Mill Road
Suite 800
Alexandria VA 22314
Phone #: 571-483-1780
800 #: 888-651-3038
e-mail: contactus@cancer.net
Home page: http://www.cancer.net/patient
- 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
- Jack Miller Center for Peripheral Neuropathy
University of Chicago
5841 South Maryland Ave, MC 2030
Chicago IL 60637
Phone #: 773-702-5800
800 #: N/A
e-mail: N/A
Home page: http://millercenter.uchicago.edu
- 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
- 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/
- March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
Phone #: 914-997-4488
800 #: 888-663-4637
e-mail: Askus@marchofdimes.com
Home page: http://www.marchofdimes.com
- NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda MD 20892-3675
Phone #: 301-495-4484
800 #: 877-226-4267
e-mail: NIAMSinfo@mail.nih.gov
Home page: http://www.niams.nih.gov/Health_Info
- Rare Cancer Alliance
1649 North Pacana Way
Green Valley AZ 85614
Phone #: 520-625-5495
800 #: --
e-mail: sharon.lane@rare-cancer.org
Home page: http://www.rare-cancer.org
- UCSF Hemophilia Treatment Center
400 Parnassus Ave.
First Floor
San Francisco CA 94143
Phone #: 415-353-2986
800 #: N/A
e-mail: N/A
Home page: http://www.ucsfhealth.org/adult/medical_services/blood/hemophilia/index.html
|
|
