Information and Resources
Mastocytosis
Important
It is possible that the main title of the report Mastocytosisis not the name you expected.
Synonyms
- Systemic Mast Cell Disease
- Systemic Mastocytosis
- Urticaria pigmentosa
Disorder Subdivisions
- Mast Cell Leukemia
- Cutaneous Mastocytosis
- Indolent Systemic Mastocytosis
- Mastocytosis with an Associated Hematological Disorder
- Mast Cell Sarcoma/Extracutaneous Mastocytoma
- Aggressive Systemic Mastocytosis
General Discussion
Mastocytosis is a rare disorder characterized by abnormal accumulations of mast cells in skin, bone marrow, and internal organs such as the liver, spleen and lymph nodes. Cases beginning during adulthood tend to involve the inner organs in addition to the skin whereas, during childhood, the condition is often marked by skin manifestations with minimal or no organ involvement. When there is evidence of bone marrow or internal organ involvement, the disease is referred to as "systemic mastocytosis".
Although the majority of cases follow an indolent course, some patients may have evidence of a blood disorder such as a myelodysplastic or myeloproliferative disorder at the time of diagnosis. The course and prognosis of mastocytosis in these patients are determined by this associated hematologic disorder. More aggressive forms of mastocytosis and mast cell leukemias are very rarely encountered.
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Resources
Mastocytosis Society, Inc.
P.O. Box 731
Brenham
TX
77834
USA
Tel: (413)862-4556
info@tmsforacure.org
http://www.tmsforacure.org
NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda
MD
20892-3675
USA
Tel: (301)495-4484
Fax: (301)718-6366
800: (877)226-4267
TDD: (301)565-2966
NIAMSinfo@mail.nih.gov
http://www.niams.nih.gov/Health_Info
MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay
WI
54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
800: (877)336-5333
mums@netnet.net
http://www.netnet.net/mums/
CMPD Education Foundation
PO Box 4758
Scottsdale
AZ
85261
Tel: (480)443-1975
Fax: (480)443-1154
jniblack@mpdinfo.org
http://www.mpdinfo.org
Cancer.Net
American Society of Clinical Oncology
2318 Mill Road
Suite 800
Alexandria
VA
22314
Tel: (571)483-1780
Fax: (571)366-9537
800: (888)651-3038
contactus@cancer.net
http://www.cancer.net/patient
Mastokids
P. O. Box 253
Blue Point
NY
11715
USA
Tel: (678)947-5455
info@mastokids.org
http://www.mastokids.org
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
The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.
It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report
This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.
For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org
Last Updated: 1/3/2007
Copyright 1987, 1990, 1992, 1994, 1996, 1998, 1999, 2002, 2004, 2007 National Organization for Rare Disorders, Inc.
WebMD Medical Reference from the National Organization of Rare Disorders

