Amyloidosis

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Amyloidosis is not the name you expected.

Disorder Subdivisions

  • Primary Amyloidosis
  • Secondary Amyloidosis
  • Hereditary Amyloidosis
  • Localized 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.
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Resources

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com

NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda, MD 20892-3675
USA
Tel: (301)495-4484
Fax: (301)718-6366
Tel: (877)226-4267
TDD: (301)565-2966
Email: NIAMSinfo@mail.nih.gov
Internet: http://www.niams.nih.gov/Health_Info

Association Fransaise Contre l'amylose
66, rue Saint Jacques
Immeuble le Pacin II
Marseille, Intl 13006
France
Tel: 04 42 94 90 86
Fax: 04 42 94 90 87
Internet: http://www.amylose.asso.fr

Rare Cancer Alliance
1649 North Pacana Way
Green Valley, AZ 85614
USA
Tel: (520)625-5495
Fax: (615)526-4921
Email: sharon.lane@rare-cancer.org
Internet: http://www.rare-cancer.org

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Email: ordr@od.nih.gov
Internet: 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
Tel: (773)702-5800
Fax: (773)702-5577
Internet: http://millercenter.uchicago.edu

Amyloidosis Support Groups, Inc
232 Orchard Drive
Wood Dale, IL 60191
Tel: (708)987-7711
Fax: (847)350-0577
Tel: (866)404-7539
Email: muriel@finkelsupply.com
Internet: http://www.amyloidosissupport.com

Amyloidosis Australia, Inc.
17 Victoria Street
Ferntree Gully
Victoria, 3156
Australia
Tel: (+61)03 9758 2172
Fax: (+61)03 9758 2172
Email: ellen@amyloidosisaustralia.org
Internet: http://www.amyloidosisaustralia.org

Amyloidosis Foundation
7151 N. Main St.
Suite 208
Clarkston, MI 48346
Tel: (248)922-9610
Fax: (248)922-9620
Tel: (877)269-5643
Email: modonnell@amyloidosisresearchfoundation.org
Internet: http://www.amyloidosis.org and http://www.amyloidosisresearchfoundation.org

UCSF Hemophilia Treatment Center
400 Parnassus Ave.
First Floor
San Francisco, CA 94143
Tel: (415)353-2986
Fax: (415)353-2600
Internet: http://www.ucsfhealth.org/adult/medical_services/blood/hemophilia/index.html

Cancer.Net
American Society of Clinical Oncology
2318 Mill Road
Suite 800
Alexandria, VA 22314
Tel: (571)483-1780
Fax: (571)366-9537
Tel: (888)651-3038
Email: contactus@cancer.net
Internet: http://www.cancer.net/patient

Kidney & Urology Foundation of America, Inc.
152 Madison Ave.
Suite 201
New York, NY 10016
Tel: (212)629-9770
Fax: (212)629-5652
Tel: (800)633-6628
Email: info@kidneyurology.org
Internet: http://www.kidneyurology.org

For a Complete Report

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html

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