NORD's
Washington Office
 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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Copyright 1986, 1987, 1988, 1990, 1992, 1996, 1997, 1998, 1999, 2000, 2005, 2008
NORD is very grateful to Rodger J. Elble, MD, PhD, Professor and Chair of Neurology,
Director, Neurology Residency Program, Southern Illinois University School of Medicine, for assistance in the preparation of this report.
Synonyms of Progressive Supranuclear Palsy
- Nuchal Dystonia Dementia Syndrome
- PSP
- Steele-Richardson-Olszewski Syndrome
Disorder Subdivisions
General Discussion
Progressive supranuclear palsy (PSP) is a rare degenerative neurological disorder characterized by loss of balance and impaired walking; loss of control of voluntary eye movement, especially in the downward direction; abnormal muscle tone (rigidity); speech difficulties (dysarthria); and problems related to swallowing and eating (dysphagia). Affected individuals frequently experience personality changes and cognitive impairment. Symptoms typically begin in one’s 60s, but can start as early as the 40s. The exact cause of progressive supranuclear palsy is unknown. PSP is often misdiagnosed as Parkinson’s disease, Alzheimer's disease, or other neurodegenerative disorders.
Organizations related to Progressive Supranuclear Palsy
- CurePSP: Society for Progressive Supranuclear Palsy
Executive Plaza III
11350 McCormick Road, Suite 906
Hunt Valley MD 21031
Phone #: 410-785-7004
800 #: 800-457-4777
e-mail: info@curepsp.org
Home page: http://www.psp.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
- 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/
- National Parkinson Foundation, Inc.
1501 NW 9th Ave/Bob Hope Road
Miami FL 33136-1494
Phone #: 305-243-6666
800 #: 800-327-4545
e-mail: contact@parkinson.org
Home page: http://www.parkinson.org
- Progressive Supranuclear Palsy (PSP Europe) Association
PSP House
167 Watling Street West
Towcester
Northamptonshire Intl NN12 6BX
Phone #: 013-27 -322410
800 #: --
e-mail: psp@pspeur.org
Home page: http://www.pspeur.org
- UCSF Memory and Aging Center
350 Parnassus Avenue
Suite 706
San Francisco CA 94117
Phone #: 415-476-6800
800 #: N/A
e-mail: N/A
Home page: http://memory.ucsf.edu
- WE MOVE (Worldwide Education and Awareness for Movement Disorders)
204 West 84th Street
New York NY 10024
Phone #: 212-875-8312
800 #: N/A
e-mail: wemove@wemove.org
Home page: http://www.wemove.org
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