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: info@sclerodermaRESEARCH.org
Internet: http://www.srfcure.org

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 Avenue
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 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

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

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/

National Registry for Childhood Onset Scleroderma
726 South BST, 3500 Terrace St.
University of Pittsburgh
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.arthritis.pitt.edu

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

Lupus Society of Alberta
Suite 200, 1301 - 8 St. SW
Calgary
Alberta
T2R 1B7
Canada
Tel: 403-228-7956
Fax: 403-228-7853
Tel: 888-242-9182
Email: lupuslsa@shaw.ca
Internet: 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
Tel: (732)664-9259
Email: autoimmunehelp@aol.com
Internet: http://www.aininc.org

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 (ESID)
c/o Dr. Bodo Grimbacher (ESID Board Member)
Division of Rheumatology and Clinical Immunology
Department of Medicine, University Hospital Freiburg
Hugstetter Strasse 55
Freiburg, D-79106
Germany
Tel: +31 73-6992965
Fax: +31 73-6992948
Email: info@esid.org
Internet: http://www.esid.org

AutoImmunity Community
Tel: (919) 552-9057
Email: bandrews@autoimmunitycommunity.org
Internet: http://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

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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