NORD's
Washington Office
 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
|
|
|
The National Organization for Rare Disorders (NORD) web site, its databases,
and the contents thereof are copyrighted by NORD. No part of the NORD web
site, databases, or the contents may be copied in any way, including but not
limited to the following: electronically downloading, storing in a retrieval
system, or redistributing for any commercial purposes without the express
written permission of NORD. Permission is hereby granted to print one hard
copy of the information on an individual disease for your personal use,
provided that such content is in no way modified, and the credit for the
source (NORD) and NORD’s copyright notice are included on the printed copy.
Any other electronic reproduction or other printed versions is strictly
prohibited.
The information in NORD's Rare Disease Database is for educational purposes only. It
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 2002
Synonyms of Alveolar Soft Part Sarcoma
- Alveolar sarcoma of soft parts
- ASPS
- ASP sarcoma
Disorder Subdivisions
General Discussion
Alveolar soft part sarcoma (ASPS) is a rare sarcoma (malignant tumor of connective tissue) of an unclear cause. It is among the least common sarcomas, representing 0.2-1 percent of large studies of soft tissue sarcomas. Since there are approximately 8000 soft-tissue sarcomas per year that arise in the United States, this means there are on the order of 15 to 80 cases nationwide each year. It is characterized by a painless mass in the leg or buttock, with a particular affinity to travel to the lungs as multiple nodules, presumably while the sarcoma itself is still small. ASPS is very rare, because it involves a specific breaking and joining event between two chromosomes, called an "unbalanced translocation". This finding is observed in essentially all ASPS examined so far. This finding cannot be passed on to children, however, as the finding occurs only in the tumor, not in the normal cells; in addition, there are no families in which multiple family members have ASPS.
Treatment is with surgery and radiation for the primary place where the sarcoma arises. For disease that travels to the lungs, sometimes surgery is possible to remove nodules, but more typically chemotherapy is the only option for treatment. This tumor tends to be resistant to standard chemotherapy, so new treatments involving new chemotherapy drugs are also a reasonable option for treatment. Interferon-alfa showed benefit in one person from Japan with ASPS. There is little other data on possible helpful chemotherapy for this tumor.
.
Organizations related to Alveolar Soft Part Sarcoma
- Alliance Against Alveolar Soft Part Sarcoma
141-08 Coolidge Ave
Briarwood NY 11435
Phone #: 718-523-7752
800 #: N/A
e-mail: info@alveolarspsarcoma.net
Home page: http://www.alveolarspsarcoma.net/
- 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
- BeatSarcoma
76 Ellsworth Street
San Francisco CA 94110
Phone #: 415-651-4473
800 #: N/A
e-mail: info@beatsarcoma.org
Home page: http://www.beatsarcoma.org/
- Cancer Support Community
919 18th Street N.W.
Suite 54
Washington DC 20006
Phone #: 202-659-9709
800 #: 888-793-9355
e-mail: N/A
Home page: www.cancersupportcommunity.org
- 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
- Cure Alveolar Soft Part Sarcoma International
260 Tappan St.
Brookline MA 02445
Phone #: 617-731-1143
800 #: N/A
e-mail: landesmany@yahoo.com
Home page: http://cureasps.org/
- 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: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Home page: http://rarediseases.info.nih.gov/GARD
- Lance Armstrong Foundation
2201 E. Sixth Street
Austin TX 78702
Phone #: 512-236-8820
800 #: 877-236-8820
e-mail: media@livestrong.org
Home page: http://www.livestrong.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: cancergovstaff@mail.nih.gov
Home page: http://www.cancer.gov
- National Coalition for Cancer Survivorship
1010 Wayne Avenue
Suite770
Silver Spring MD 20910-5600
Phone #: 301-650-9127
800 #: 877-622-7937
e-mail: infor@canceradvocacy.org
Home page: http://
- Northwest Sarcoma Foundation
2065 NW Miller Rd.
#404
Portland OR 97229
Phone #: 503-954-5740
800 #: N/A
e-mail: melissa@nwsarcoma.org
Home page: http://www.nwsarcoma.org
- 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
- Sarcoma Alliance
775 E. Blithedale #334
Mill Valley CA 94941
Phone #: 415-381-7236
800 #: --
e-mail: info@sarcomaalliance.org
Home page: http://www.sarcomaalliance.org
- Sarcoma Foundation of America
9884 Main Street
Damascus MD 20872
Phone #: 301-253-8687
800 #: --
e-mail: info@curesarcoma.org
Home page: http://www.curesarcoma.org
|
|
