Myelodysplastic Syndromes

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Myelodysplastic Syndromes 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

  • Myelodysplasia
  • Pre-leukemia

Disorder Subdivisions

  • None

General Discussion

Myelodysplastic syndromes (MDS) are a rare group of blood disorders that occur as a result of improper development of blood cells within the bone marrow. The three main types of blood cells (i.e., red blood cells, white blood cells and platelets) are affected. Red blood cells deliver oxygen to the body, white blood cells help fight infections, and platelets assist in clotting to stop blood loss. These improperly developed blood cells fail to develop normally and enter the bloodstream. As a result, individuals with MDS have abnormally low blood cell levels (low blood counts). General symptoms associated with MDS include fatigue, dizziness, weakness, bruising and bleeding, frequent infections, and headaches. In some cases, MDS may progress to life-threatening failure of the bone marrow or develop into an acute leukemia. The exact cause of MDS is unknown. There are no certain environmental risk factors.

Resources

Aplastic Anemia & MDS International Foundation, Inc.
100 Park Avenue
Suite 108
Rockville, MD 20850
USA
Tel: (301)279-7202
Fax: (301)279-7205
Tel: (800)747-2820
Email: help@aamds.org
Internet: http://www.aamds.org

Leukemia & Lymphoma Society
1311 Mamaroneck Avenue
Suite 310
White Plains, NY 10605
Tel: (914)949-5213
Fax: (914)949-6691
Tel: (800)955-4572
Email: infocenter@LLS.org
Internet: http://www.LLS.org

American Cancer Society, Inc.
1599 Clifton Road NE
Atlanta, GA 30329
USA
Tel: (404)320-3333
Tel: (800)227-2345
TDD: (866)228-4327
Internet: http://www.cancer.org

NIH/National Heart, Lung and Blood Institute Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
Tel: (301)592-8573
Fax: (301)251-1223
Email: nhlbiinfo@rover.nhlbi.nih.gov

National Cancer Institute
6116 Executive Blvd, MSC 8322, Room 3036A
Bethesda, MD 20892-8322
USA
Tel: (301)435-3848
Tel: (800)422-6237
TDD: (800)332-8615
Internet: http://www.cancer.gov

World Health Organization (WHO) Regional Office for the Americas (AMRO)
Pan American Health Organization (PAHO)
525 23rd Street NW
Washington, DC 20037
Tel: (202)974-3000
Fax: (202)974-3663
Email: postmaster@paho.org
Internet: http://www.who.ch/

National Bone Marrow Transplant Link
20411 W. 12 Mile Rd
Suite 108
Southfield, MI 48076
Tel: (248)358-1886
Fax: (248)358-1889
Tel: (800)546-5268
Email: info@nbmtlink.org
Internet: http://www.nbmtlink.org

Aplastic Anemia & Myelodysplasia Association of Canada
11181 Yonge Street,Suite 321
Richmond Hill
Ontario, Intl L4S 1L2
Canada
Tel: 9057800698
Fax: 8888400039
Email: info@aamac.ca
Internet: http://www.aamac.ca

National Marrow Donor Program
3001 Broadway St. NE
Suite 500
Minneapolis, MN 55413-1753
USA
Tel: (612)627-5800
Fax: (612)627-8125
Tel: (800)627-7692
Internet: http://www.marrow.org

Myeloproliferative Mailing List (MPD-SUPPORT-L)
3706 North Roosevelt Blvd.
Key West, FL 44030
USA
Tel: (305)295-4444
Fax: (305)295-3335
Email: lov2laf@bellsouth.net
Internet: http://www.mpdsupport.org

Rare Cancer Alliance
1649 North Pacana Way
Green Valley, AZ 85614
USA
Tel: (520)625-5495
Fax: (615)526-4921
Email: sharon.lane@rare-cancer.org
Internet: http://www.rare-cancer.org

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

Anemia Institute for Research and Education
151 Bloor Street West
Suite 600
Toronto, Ontario, M5S 1S4
Canada
Tel: 416-969-7431
Fax: 416-969-7420
Tel: 877-992-6364
Email: info@anemiainstitute.org
Internet: http://www.anemiainstitute.org

Patient Registries at Slone: Myeloma & MDS
Slone Epidemiology Center at Boston University
1010 Commonwealth Avenue
Boston, MA 02215
Tel: (617)734-6006
Fax: (617)738-5119
Tel: (800)231-3769
Email: registry@slone.bu.edu
Internet: http://www.bu.edu/prs

Friends of Cancer Research
2231 Crystal Drive
Suite 200
Arlington, VA 22202
Tel: (703)302-1503
Fax: (703)302-1568
Email: info@focr.org
Internet: http://www.focr.org

UCSF Hemophilia Treatment Center
400 Parnassus Ave.
First Floor
San Francisco, CA 94143
Tel: (415)353-2986
Fax: (415)353-2600
Internet: http://www.ucsfhealth.org/adult/medical_services/blood/hemophilia/index.html

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

Myeloproliferative Disease Support and Free Daily Email Digest
2011 Flagler Ave.
Key West, FL 33040
USA
Tel: (305)295-4444
Email: listserv@listserv.aol.com
Internet: http://www.mpdsupport.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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