Mastocytosis

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Mastocytosis is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

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
Email: info@tmsforacure.org
Internet: 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
Tel: (877)226-4267
TDD: (301)565-2966
Email: NIAMSinfo@mail.nih.gov
Internet: http://www.niams.nih.gov/Health_Info

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Email: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

CMPD Education Foundation
233 S. Wacker Drive, Suite 375
Chicago, IL 60606
Tel: (312)683-7243
Fax: (312)332-0840
Email: ian.sweet@homemail.com.au
Internet: http://www.mpdinfo.org

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766
Email: getinfo@madisonsfoundation.org
Internet: http://www.madisonsfoundation.org

Cancer.Net
American Society of Clinical Oncology
2318 Mill Road
Suite 800
Alexandria, VA 22314
Tel: (571)483-1780
Fax: (571)366-9537
Tel: (888)651-3038
Email: contactus@cancer.net
Internet: http://www.cancer.net/patient

Mastokids
P. O. Box 253
Blue Point, NY 11715
USA
Tel: (678)947-5455
Email: listmom@mastokids.org
Internet: http://www.mastokids.org

For a Complete Report

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

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