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Scleroderma

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Scleroderma is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

  • Progressive Systemic Sclerosis
  • PSS
  • Sclerosis, Familial Progressive Systemic
  • Systemic Sclerosis

Disorder Subdivisions

  • Morphea
  • Linear Scleroderma
  • CREST Syndrome

General Discussion

Scleroderma is a rare autoimmune connective tissue disorder characterized by abnormal thickening of the skin. Connective tissue is composed of collagen, which supports and binds other body tissues. There are several types of scleroderma. Some types affect certain, specific parts of the body, while other types can affect the whole body and internal organs (systemic). Scleroderma is also known as progressive systemic sclerosis. The exact cause of scleroderma is unknown.

Resources

Scleroderma Research Foundation
220 Montgomery Street
Suite 1411
San Francisco, CA 94104
USA
Tel: (415)834-9444
Fax: (415)834-9177
Tel: (800)441-2873
Email: srfcure@sclerodermaresearch.org
Internet: http://www.srfcure.org/home

Scleroderma Foundation
300 Rosewood Drive, Suite 105
Danvers, MA 01923
USA
Tel: (978)463-5843
Fax: (978)463-5809
Tel: (800)722-4673
Email: sfinfo@scleroderma.org
Internet: http://www.scleroderma.org

American Autoimmune Related Diseases Association, Inc.
22100 Gratiot Ave.
Eastpointe, MI 48021
Tel: (586)776-3900
Fax: (586)776-3903
Tel: (800)598-4668
Email: aarda@aarda.org
Internet: http://www.aarda.org/

NIH/National Institute of Arthritis and Musculoskeletal and Skin Diseases
Information Clearinghouse
One 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/

Juvenile Scleroderma Network, Inc.
1204 W. 13th Street
San Pedro, CA 90731
USA
Tel: (310)519-9511
Fax: (310)519-9511
Tel: (866)338-5892
Email: jsdinfo@jsdn.org
Internet: http://www.jsdn.org

National Registry for Childhood Onset Scleroderma
University of Pittsburgh
Arthritis Institute
726 South BST
3500 Terrace Street
Pittsburgh, PA 15261
USA
Tel: (412)383-8674
Fax: (412)648-9643
Tel: (800)603-8960
Email: jablonj@msx.dept-med.pitt.edu
Internet: http://www.scleroderma.org/medical/juvenile_registry.shtm

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
Internet: http://rarediseases.info.nih.gov/GARD/

Lupus Society of Alberta
Suite 200, 1301 - 8 St. SW
Calgary Alberta, T2R 1B7
Canada
Tel: 4032287956
Fax: 4032287853
Tel: 8882429182
Email: lupuslsa@shaw.ca
Internet: http://www.lupus.ab.ca

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766
Email: getinfo@madisonsfoundation.org
Internet: http://www.madisonsfoundation.org

Autoimmune Information Network, Inc.
PO Box 4121
Brick, NJ 08723
Fax: (732)543-7285
Email: autoimmunehelp@aol.com

International Scleroderma Network
7455 France Ave So #266
Edina, MN 55435-4702
Tel: (952)583-5735
Tel: (800)564-7099
Email: isn@sclero.org
Internet: http://www.sclero.org

European Society for Immunodeficiencies
1-3 rue de Chantepoulet
Geneva, CH 1211
Switzerland
Tel: 410229080484
Fax: 41229069140
Email: esid@kenes.com
Internet: http://www.esid.org

AutoImmunity Community
Email: moderator@autoimmunitycommunity.org
Internet: http://www.autoimmunitycommunity.org

Global Fibrosis Foundation
5036 Dr. Phillips Boulevard
Suite 244
Orlando, FL 32819
Tel: (407)909-0753
Fax: (407)909-0153
Tel: (800)872-6874
Email: globalfibrosis@gmail.com
Internet: http://www.globalfibrosis.com

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".

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:  12/14/2009
Copyright  1986, 1987, 1988, 1990, 1992, 1993, 1996, 1997, 1998, 2000, 2002, 2003, 2004, 2006, 2007 National Organization for Rare Disorders, Inc.

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