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, 1988, 1990, 1991, 1997, 1998, 1999, 2000, 2009
NORD is very grateful to Mark Lebwohl, MD, Professor and Chairman, Department of Dermatology, The Mount Sinai School of Medicine, for assistance in the preparation of this report.
Synonyms of Pseudoxanthoma Elasticum (PXE)
- elastosis dystrophica syndrome (obsolete)
- Gronblad-Strandberg syndrome
- systemic elastorrhexis (obsolete)
Disorder Subdivisions
- PXE, dominant type
- PXE, recessive type
General Discussion
Pseudoxanthoma elasticum, PXE, is an inherited disorder that affects selected connective tissue in some parts of the body. Elastic tissue in the body becomes mineralized; that is, calcium and other minerals are deposited in the tissue. This can result in changes in the skin, eyes, cardiovascular system, and gastrointestinal system. Clinicians first recognized PXE more than 100 years ago. Researchers have made a number of significant advances in the past few years.
Organizations related to Pseudoxanthoma Elasticum (PXE)
- 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
- MD Support - The Eyes of the Macular Degeneration Community
3600 Blue Ridge Blvd
Grandview MO 64030
Phone #: 816-761-7080
800 #: N/A
e-mail: director@mdsupport.org
Home page: http://www.mdsupport.org
- MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay WI 54301-1243
Phone #: 920-336-5333
800 #: 877-336-5333
e-mail: mums@netnet.net
Home page: http://www.netnet.net/mums/
- Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone #: 310-264-0826
800 #: N/A
e-mail: getinfo@madisonsfoundation.org
Home page: http://www.madisonsfoundation.org
- NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda MD 20892-3675
Phone #: 301-495-4484
800 #: 877-226-4267
e-mail: NIAMSinfo@mail.nih.gov
Home page: http://www.niams.nih.gov/Health_Info
- NIH/National Eye Institute
Building 31 Rm 6A32
31 Center Dr MSC 2510
Bethesda MD 20892-2510
Phone #: 301-496-5248
800 #: --
e-mail: 2020@nei.nih.gov
Home page: http://www.nei.nih.gov/
- NIH/National Heart, Lung and Blood Institute Information Center
P.O. Box 30105
Bethesda MD 20824-0105
Phone #: 301-592-8573
800 #: --
e-mail: nhlbiinfo@rover.nhlbi.nih.gov
Home page: N/A
- National Association for Pseudoxanthoma Elasticum (NAPE)
8764 Manchester Road
Suite 200
St Louis MO 63144-2724
Phone #: 314-962-0100
800 #: --
e-mail: napestlouis@sbcglobal.net
Home page: http://www.napxe.org
- PXE International, Inc.
4301 Connecticut Ave NW
Suite 404
Washington DC 20008-2304
Phone #: 202-362-9599
800 #: --
e-mail: pxe@pxe.org
Home page: http://www.pxe.org
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