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 1986, 1988, 1989, 1990, 1991, 1993, 1994, 1995, 1996, 1997, 1998, 1999, 2007
NORD is grateful to Joyce Graff and medical advisors of the VHL Family Alliance for assistance in the preparation of this report.
Synonyms of Von Hippel-Lindau Syndrome
- Angiomatosis Retinae
- Lindau Disease
- Retinocerebellar Angiomatosis
- VHL
- VHL syndrome
- Von Hippel Lindau disease
Disorder Subdivisions
General Discussion
Von Hippel-Lindau syndrome (VHL) is an autosomal dominant genetic disorder characterized by the abnormal growth of blood vessels in certain parts of the body (angiomatosis). Very small blood vessels (capillaries) "knot" together to form benign growths known as angiomas or hemangioblastomas. These may develop in the retinas of the eyes (retinal hemangioblastomas) or in the brain or spinal cord, or in the inner ear (endolymphatic sac tumors). Vascular tumors may also occur in the kidneys (renal cell carcinoma), pancreas (cysts or pancreatic neuroendocrine tumors) and/or adrenal glands (pheochromocytoma). The symptoms of von Hippel-Lindau vary greatly and depend on the size and location of the growths.
Organizations related to Von Hippel-Lindau Syndrome
- 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
- 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
- Kidney Cancer Association
1234 Sherman Avenue
Suite 203
Evanston IL 60202-1375
Phone #: 847-332-1051
800 #: 800-850-9132
e-mail: kidney.cancer@hotmail.com
Home page: http://www.curekidneycancer.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/
- 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
- NIH/National Eye Institute
Building 31 Rm 6A32
31 Center Dr MSC 2510
Bethesda MD 20892-2510
Phone #: 301-496-5248
800 #: --
e-mail: 2020@nei.nih.gov
Home page: http://www.nei.nih.gov/
- National Institute of Neurological Disorders and Stroke (NINDS)
P.O. Box 5801
Bethesda MD 20824
Phone #: 301-496-5751
800 #: 800-352-9424
e-mail: me20t@nih.gov
Home page: http://www.ninds.nih.gov/
- 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
- Sjældne Diagnoser / Rare Disorders Denmark
Frederiksholms Kanal 2, 3rd Floor
Copenhagen K None 1220
Phone #: 45 -33 -14 00 10
800 #: N/A
e-mail: mail@sjaeldnediagnoser
Home page: http://www.raredisorders.dk
- VHL Family Alliance
2001 Beacon Street
Suite 208
Boston MA 02135
Phone #: 617-277-5667
800 #: 800-767-4845
e-mail: info@vhl.org
Home page: http://www.vhl.org
- VHL Family Alliance, UK
171 Clinton Road •
Brookline MA 02445
Phone #: 617-277-5667
800 #: 800-767-4845
e-mail: uk@vhl.org
Home page: http://www.vhl.org
|
|
