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.
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"Resources" on this report.
Copyright 1988, 1989, 1996, 1997, 2004
NORD is grateful to Patricia Dahia, MD, PhD, of the Dana-Farber Cancer Institute and Harvard Medical School for assistance in the preparation of this report.
Synonyms of Pheochromocytoma
Disorder Subdivisions
- Extra-adrenal Pheochromocytoma
- Malignant Pheochromocytoma
- Paraganglioma
General Discussion
Pheochromocytoma is a rare type of tumor that arises from certain cells known as chromaffin cells, which produce hormones necessary for the body to function properly. Most pheochromocytomas originate in one of the two adrenal glands located above the kidneys in the back of the upper abdomen. Most chromaffin cells are found in the adrenal gland’s inner layer, which is known as the adrenal medulla. Approximately 90 percent of pheochromocytomas occur in the adrenal medulla. Approximately 10 percent occur outside of this area. These cases are referred to as extra-adrenal pheochromocytomas or paragangliomas. Paragangliomas may be found in the chest, heart, bladder, and/or neck or base of the skull. Symptoms associated with pheochromocytomas include high blood pressure (hypertension), headaches, excessive sweating, and/or heart palpitations. In most cases, pheochromocytomas occur randomly, for unknown reasons (sporadically). In approximately 10 to 20 percent of cases, pheochromocytomas may be inherited as an autosomal dominant trait. Some inherited cases may occur as part of a larger disorder such as multiple endocrine neoplasia types 2a and 2b, von Hippel-Lindau syndrome, or neurofibromatosis or familial paraganglioma syndromes.
Organizations related to Pheochromocytoma
- 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
- Association for Multiple Endocrine Neoplasia Disorders (AMEND)
The Warehouse
No. 1 Draper Street
Southborough, Tunbridge Wells
Kent None TN4 0PG
Phone #: 00 -44 -1892 516076
800 #: N/A
e-mail: info@amend.org.uk
Home page: http://www.amend.org.uk
- 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
- 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
- MUMS 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/
- Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone #: 310-264-0826
800 #: N/A
e-mail: getinfo@madisonsfoundation.org
Home page: http://www.madisonsfoundation.org
- March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
Phone #: 914-997-4488
800 #: 888-663-4637
e-mail: Askus@marchofdimes.com
Home page: http://www.marchofdimes.com
- National Adrenal Diseases Foundation
505 Northern Boulevard
Great Neck NY 11021
Phone #: 516-487-4992
800 #: --
e-mail: NADFmail@aol.com
Home page: http://www.nadf.us/
- 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 Dysautonomia Research Foundation
PO Box 301
Red Wing MN 55066-0102
Phone #: 651-267-0525
800 #: --
e-mail: ndrf@ndrf.org
Home page: http://www.ndrf.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
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