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Copyright 1987, 1989, 1996, 1998, 1999, 2003, 2004, 2010
NORD is very grateful to Jon Stone, FRCP, PhD, Consultant Neurologist and Honorary Senior Lecturer, Department of Clinical Neurosciences, Western General Hospital, Edinburgh, UK, for assistance in the preparation of this report.
Synonyms of Parry Romberg Syndrome
- HFA
- progressive facial hemiatrophy
- progressive hemifacial atrophy
- PRS
- Romberg syndrome
Disorder Subdivisions
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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Organizations related to Parry Romberg Syndrome
- Epilepsy Foundation
8301 Professional Place
Landover MD 20785
Phone #: 301-459-3700
800 #: 800-332-1000
e-mail: info@efa.org
Home page: http://www.epilepsyfoundation.org
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: ordr@od.nih.gov
Home page: http://rarediseases.info.nih.gov/Default.aspx
- International Scleroderma Network
7455 France Ave So #266
Edina MN 55435-4702
Phone #: 952-583-5735
800 #: 800-564-7099
e-mail: isn@sclero.org
Home page: http://www.sclero.org
- March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
Phone #: 914-997-4488
800 #: 888-663-4637
e-mail: Askus@marchofdimes.com
Home page: http://www.marchofdimes.com
- NIH/National Oral Health Information Clearinghouse
1 NOHIC Way
Bethesda MD 20892-3500
Phone #: 301-402-7364
800 #: --
e-mail: nohic@nidcr.nih.gov
Home page: http://www.nohic.nidcr.nih.gov
- National Craniofacial Foundation
3100 Carlisle Street
Suite 215
Dallas TX 75204
Phone #: --
800 #: 800-535-3643
e-mail: N/A
Home page: N/A
- National Institute of Neurological Disorders and Stroke (NINDS)
P.O. Box 5801
Bethesda MD 20824
Phone #: 301-496-5751
800 #: 800-352-9424
e-mail: me20t@nih.gov
Home page: http://www.ninds.nih.gov/
- Parry-Romberg Syndrome Resource, Inc.
4815 Crystal River Ct.
Indianapolis IN 46240
Phone #: 317-566-8149
800 #: N/A
e-mail: prsresource@comcast.net
Home page: http://www.prsresource.com
- Romberg's Connection
10622 S. Parkside
Chicago Ridge IL 60415
Phone #: 708-425-3496
800 #: --
e-mail: rombergs@hotmail.com
Home page: http://www.therombergsconnection.com
- Society for the Rehabilitation of the Facially Disfigured, Inc.
550 First Avenue
New York NY 10016
Phone #: 212-340-5400
800 #: --
e-mail: N/A
Home page: N/A
- TNA - The Facial Pain Association
925 NW 56th Terrace, Suite C
Gainesville FL 32605-6402
Phone #: 325-331-7009
800 #: 800-923-3608
e-mail: patientinfo@tna-support.org
Home page: http://www.endthepain.org
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