Scleroderma

Content provided by National Organization for Rare Disorders

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: 4158349444

Fax: 4158349177

Tel: 8004412873

Email: info@sclerodermaRESEARCH.org

Internet: http://www.srfcure.org



Scleroderma Foundation

300 Rosewood Drive, Suite 105 Byfield, MA 01922

Danvers, MA 01923

USA

Tel: 9784635843

Fax: 9784635809

Tel: 8007224673

Email: sfinfo@sceroderma.org

Internet: http://www.scleroderma.org



American Autoimmune Related Diseases Association, Inc.

22100 Gratiot Avenue

Eastpointe, MI 48021-2227

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: 3014954484

Fax: 3017186366

Tel: 8772264267

TDD: 3015652966

Email: NIAMSinfo@mail.nih.gov

Internet: http://www.niams.nih.gov/Health_Info



Juvenile Scleroderma Network, Inc.

1204 W. 13th St

San Pedro, CA 90731

USA

Tel: 3105199511

Fax: 3105199511

Tel: 8663385892

Email: jsdinfo@jsdn.org

Internet: http://www.jsdn.org



MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network

150 Custer Court

Green Bay, WI 54301-1243

USA

Tel: 9203365333

Fax: 9203390995

Tel: 8773365333

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: 4123838674

Fax: 4126489643

Tel: 8006038960

Email: jablonj@msx.dept-med.pitt.edu

Internet: http://www.arthritis.pitt.edu



Lupus Society of Alberta

Suite 200, 1301 - 8 St. SW

Calgary, AB, T2R 1B7

Canada

Tel: 403-228-7956

Fax: 403-228-78533

Tel: 888-242-9182

Email: lupuslsa@shaw.ca

Internet: www.lupus.ab.ca



Autoimmune Information Network, Inc

PO Box 4121

Brick, NJ 08723

Tel: (732)262-0450

Fax: (732)262-0450

Email: autoimmunehelp@aol.com

Internet: http://www.aininc.org



International Scleroderma Network

7455 France Ave So #266

Edina, MN 55435

Tel: (952)831-3091

Tel: (800)564-7099

Email: site-inquiries@sclero.org

Internet: http://www.sclero.org



European Society for Immunodeficiencies (ESID)

c/o Dr. Esther de Vries

Jeroen Bosch Hospital

Dept. Paediatrics

P.O. Box 90153

Hertogenbosch, 5200 ME's

Netherlands

Tel: +31 73-6992965

Fax: +31 73-6992948

Email: info@esid.org

Internet: http://www.esid.org



AutoImmunity Community



Tel: (919)-55-2-9057

Email: bandrews@autoimmunitycommunity.org

Internet: http://autoimmunitycommunity.org



Parry-Romberg Symdrome Resource, Inc.

4815 Crystal River Ct.

Indianapolis, IN 46240

USA

Tel: 3175668149

Email: prsresource@comcast.net

Internet: http://www.prsresource.com, http://www.parryrombergsyndorme.com

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:  7/23/2007

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Last updated:	July 23, 2007