Amyloidosis

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)428-7100

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



MUMS (Mothers United for Moral Support, Inc) 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/



Jack Miller Center for Peripheral Neuropathy

University of Chicago

5841 S. Maryland Ave, MC 2030

Chicago, IL 60637

Tel: (773)702-5800

Fax: (773)702-5577

Email: information-millercenter@neurology.bsd.uchicago.edu

Internet: http://millercenter.uchicago.edu



Amyloidosis Support Groups, Inc

232 Orchard Drive

Wood Dale, IL 60191

Tel: (630)350-7539

Fax: (847)350-0577

Tel: (866)404-7539

Email: muriel@amyloidosissupport.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

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

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated:  4/29/2008

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