Parry Romberg Syndrome

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Parry Romberg Syndrome 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

  • PRS
  • HFA
  • progressive facial hemiatrophy
  • progressive hemifacial atrophy
  • Romberg syndrome

Disorder Subdivisions

  • None

General Discussion

Parry-Romberg syndrome is a rare, acquired disorder characterized by slowly progressive shrinkage (atrophy) of the skin and soft tissues of half of the face (hemifacial atrophy). In rare cases, both sides of the face are affected. In some cases, atrophy may also affect the limbs usually on the same side of the body as the facial atrophy. The severity and specific symptoms of Parry-Romberg syndrome are highly variable from one person to another. Additional symptoms can potentially develop in some people including neurological abnormalities or abnormalities affecting the eyes or teeth. Parry-Romberg syndrome usually becomes apparent during the first decade of life or early during the second decade. The majority of individuals with Parry-Romberg syndrome experience symptoms before the age of 20 years. The exact cause of Parry-Romberg syndrome is unknown; cases appear to occur randomly for unknown reasons (sporadically).
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Resources

TNA - The Facial Pain Association
925 NW 56th Terrace, Suite C
Gainesville, FL 32605-6402
Tel: (325)331-7009
Fax: (325)331-7078
Tel: (800)923-3608
Email: patientinfo@tna-support.org
Internet: http://www.endthepain.org

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com

Epilepsy Foundation
8301 Professional Place
Landover, MD 20785
Tel: (301)459-3700
Fax: (301)577-2684
Tel: (800)332-1000
TDD: (800)332-2070
Email: info@efa.org
Internet: http://www.epilepsyfoundation.org

National Institute of Neurological Disorders and Stroke (NINDS)
P.O. Box 5801
Bethesda, MD 20824
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
TDD: (301)468-5981
Email: me20t@nih.gov
Internet: http://www.ninds.nih.gov/

NIH/National Oral Health Information Clearinghouse
1 NOHIC Way
Bethesda, MD 20892-3500
USA
Tel: (301)402-7364
Fax: (301)907-8830
TDD: (301)656-7581
Email: nohic@nidcr.nih.gov
Internet: http://www.nohic.nidcr.nih.gov

Society for the Rehabilitation of the Facially Disfigured, Inc.
550 First Avenue
New York, NY 10016
Tel: (212)340-5400

Romberg's Connection
10622 S. Parkside
Chicago Ridge, IL 60415
USA
Tel: (708)425-3496
Email: rombergs@hotmail.com
Internet: http://www.therombergsconnection.com

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

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

Parry-Romberg Syndrome Resource, Inc.
4815 Crystal River Ct.
Indianapolis, IN 46240
USA
Tel: (317)566-8149
Email: prsresource@comcast.net
Internet: http://www.prsresource.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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