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 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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should never be used for diagnostic or treatment purposes. If you have questions regarding
a medical condition, always seek the advice of your physician or other qualified health
professional. NORD's reports provide a brief overview of rare diseases. For more specific
information, we encourage you to contact your personal physician or the agencies listed as
"Resources" on this report.
Copyright 2004, 2005, 2006
NORD is grateful to John Barrett, MD, NIH National Heart, Lung, and Blood Institute, for assistance in the preparation of this report.
Synonyms of Myelodysplastic Syndromes
- Myelodysplasia
- Pre-leukemia
Disorder Subdivisions
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.
Organizations related to Myelodysplastic Syndromes
- American Cancer Society, Inc.
1599 Clifton Road NE
Atlanta GA 30329
Phone #: 404-320-3333
800 #: 800-227-2345
e-mail: N/A
Home page: http://www.cancer.org
- Anemia Institute for Research and Education
151 Bloor Street West
Suite 600
Toronto, Ontario None M5S 1S4
Phone #: 416--96-9-7431
800 #: 877--99-2-6364
e-mail: info@anemiainstitute.org
Home page: http://www.anemiainstitute.org
- Aplastic Anemia & MDS International Foundation, Inc.
100 Park Avenue
Suite 108
Rockville MD 20850
Phone #: 301-279-7202
800 #: 800-747-2820
e-mail: help@aamds.org
Home page: http://www.aamds.org
- Aplastic Anemia & Myelodysplasia Association of Canada
11181 Yonge Street,Suite 321
Richmond Hill
Ontario Intl L4S 1L2
Phone #: 905-780-0698
800 #: N/A
e-mail: info@aamac.ca
Home page: http://www.aamac.ca
- Cancer.Net
American Society of Clinical Oncology
2318 Mill Road
Suite 800
Alexandria VA 22314
Phone #: 571-483-1780
800 #: 888-651-3038
e-mail: contactus@cancer.net
Home page: http://www.cancer.net/patient
- Friends of Cancer Research
2231 Crystal Drive
Suite 200
Arlington VA 22202
Phone #: 703-302-1503
800 #: N/A
e-mail: info@focr.org
Home page: http://www.focr.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
- Leukemia & Lymphoma Society
1311 Mamaroneck Avenue
Suite 310
White Plains NY 10605
Phone #: 914-949-5213
800 #: 800-955-4572
e-mail: infocenter@LLS.org
Home page: http://www.LLS.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/
- Myeloproliferative Disease Support and Free Daily Email Digest
2011 Flagler Ave.
Key West FL 33040
Phone #: 305-295-4444
800 #: N/A
e-mail: roberttollen@gmail.com or mensabrain@aol.com
Home page: http://www.MPDSUPPORT.ORG
- Myeloproliferative Mailing List (MPD-SUPPORT-L)
3706 North Roosevelt Blvd.
Key West FL 44030
Phone #: 305-295-4444
800 #: --
e-mail: lov2laf@bellsouth.net
Home page: http://www.mpdsupport.org
- 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 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
- National Marrow Donor Program
3001 Broadway St. NE
Suite 500
Minneapolis MN 55413-1753
Phone #: 612-627-5800
800 #: 800-627-7692
e-mail: N/A
Home page: http://www.marrow.org
- Patient Registries at Slone: Myeloma & MDS
Slone Epidemiology Center at Boston University
1010 Commonwealth Avenue
Boston MA 02215
Phone #: 617-734-6006
800 #: 800-231-3769
e-mail: registry@slone.bu.edu
Home page: http://www.bu.edu/prs
- Rare Cancer Alliance
1649 North Pacana Way
Green Valley AZ 85614
Phone #: 520-625-5495
800 #: --
e-mail: sharon.lane@rare-cancer.org
Home page: http://www.rare-cancer.org
- UCSF Hemophilia Treatment Center
400 Parnassus Ave.
First Floor
San Francisco CA 94143
Phone #: 415-353-2986
800 #: N/A
e-mail: N/A
Home page: http://www.ucsfhealth.org/adult/medical_services/blood/hemophilia/index.html
- World Health Organization (WHO) Regional Office for the Americas (AMRO)
Pan American Health Organization (PAHO)
525 23rd Street NW
Washington DC 20037
Phone #: 202-974-3000
800 #: --
e-mail: postmaster@paho.org
Home page: http://www.who.ch/
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