Synonyms
- Progressive Systemic Sclerosis
- PSS
- Sclerosis, Familial Progressive Systemic
- Systemic Sclerosis
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 DriveByfield, MA 01922
Suite 105
Danvers, MA 01923
USA
Tel: 9784635843
Fax: 9784635809
Tel: 8007224673
Email: sfinfo@scleroderma.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)664-9259
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 Syndrome Resource, Inc.
4815 Crystal River Ct.
Indianapolis, IN 46240
USA
Tel: 3175668149
Email: prsresource@comcast.net
Internet: http://www.prsresource.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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