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X linked Lymphoproliferative Syndrome
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Copyright 1989, 1995, 1997, 1998, 1999, 2006, 2007
Synonyms of X linked Lymphoproliferative Syndrome
- Duncan Disease
- EBV Susceptibility (EBVS)
- Epstein-Barr Virus-Induced Lymphoproliferative Disease in Males
- Immunodeficiency-5 (IMD5)
- Purtilo Syndrome
- X-Linked Progressive Combined Variable Immunodeficiency
- XLP
Disorder Subdivisions
General Discussion
X-linked lymphoproliferative (XLP) syndrome is an extremely rare inherited (primary) immunodeficiency disorder characterized by a defective immune system that is powerfully responsive to infection with the Epstein-Barr virus (EBV). This virus is common among the general population and is relatively well-known because it is the cause of infectious mononucleosis (IM), usually with no long-lasting effects. However, in individuals with XLP, exposure to EBV may result in severe, life-threatening fulminant hepatitis; abnormally low levels of antibodies in the blood and body secretions (hypogammaglobulinemia), resulting in increased susceptibility to various infections; malignancies of certain types of lymphoid tissue (B-cell lymphomas); and/or other abnormalities. The range of symptoms and findings associated with XLP may vary considerably from case to case. In addition, the range of effects may change in an affected individual over time. In most cases, individuals with XLP experience an onset of symptoms anytime from ages about 6 months to 10 years of age.
Organizations related to X linked Lymphoproliferative Syndrome
- Center for International Blood and Marrow Transplant Research
Medical College of Wisconsin
8701 Watertown Plank Road
Milwaukee WI 53226
Phone #: 414-456-8325
800 #: --
e-mail: mnugent@hpi.mcw.edu
Home page: http://www.ibmtr.org;
- European Society for Immunodeficiencies (ESID)
c/o Dr. Bodo Grimbacher (ESID Board Member)
Division of Rheumatology and Clinical Immunology
Department of Medicine, University Hospital Freiburg
Hugstetter Strasse 55
Freiburg None D-79106
Phone #: +31- 73--6992965
800 #: N/A
e-mail: info@esid.org
Home page: http://www.esid.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
- Immune Deficiency Foundation
40 West Chesapeake Avenue
Suite 308
Towson MD 21204
Phone #: 410-321-6647
800 #: 800-296-4433
e-mail: idf@primaryimmune.org
Home page: http://www.primaryimmune.org
- International Patient Organization for Primary Immunodeficiencies
Firside
Main Road
Downderry
Cornwall None PL11 3LE
Phone #: 44 -150-3 250 668
800 #: --
e-mail: david@ipopi.org
Home page: http://www.ipopi.org/
- Jeffrey Modell Foundation
747 Third Avenue
34th Floor
New York NY 10017
Phone #: 212-819-0200
800 #: 866-469-6474
e-mail: info@jmfworld.org
Home page: http://www.info4pi.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/Hematology Branch, National Heart, Lung and Blood Institute (NHLBI)
10 Center Dr, Building 10-CRC
3-5140, MSC-1202
Bethesda MD 20892-1202
Phone #: 301-402-0764
800 #: --
e-mail: zamaniw@nhlbi.nih.gov
Home page: http://dir.nhlbi.nih.gov/labs/hb/index.asp?
- NIH/National Institute of Allergy and Infectious Diseases
6610 Rockledge Drive
MSC 6612
Bethesda MD 20892-6612
Phone #: 301-496-5717
800 #: --
e-mail: N/A
Home page: http://www.niaid.nih.gov/
- National Bone Marrow Transplant Link
20411 W. 12 Mile Rd
Suite 108
Southfield MI 48076
Phone #: 248-358-1886
800 #: 800-546-5268
e-mail: info@nbmtlink.org
Home page: http://www.nbmtlink.org
- National Cancer Institute
6116 Executive Blvd, MSC 8322, Room 3036A
Bethesda MD 20892-8322
Phone #: 301-435-3848
800 #: 800-422-6237
e-mail: N/A
Home page: http://www.cancer.gov
- OncoLink: The University of Pennsylvania Cancer Center Resource
3400 Spruce Street
2 Donner
Philadelphia PA 19104-4283
Phone #: 215-349-5445
800 #: --
e-mail: editors@oncolink.upenn.edu
Home page: http://www.oncolink.upenn.edu
- XLP Research Trust
60 Winchester Road
Romsey
Hampshire None 5051 8JA
Phone #: +44- 17-94 521077
800 #: N/A
e-mail: info@xlpresearchtrust.org
Home page: http://www.xlpresearchtrust.org
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