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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

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