Diseases & Conditions


A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

Von Hippel-Lindau Syndrome


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
      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 #: 301-519-3194
      800 #: 888-205-2311
      e-mail: gardinfo@nih.gov
      Home page: http://www.genome.gov/10000409
    • Kidney Cancer Association
      1234 Sherman Avenue
      Evanston IL 60202-1375
      Phone #: 847-332-1051
      800 #: 800-850-9132
      e-mail: office@curekidneycancer.org
      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
      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)
      31 Center Drive
      Bethesda MD 20892-2540
      Phone #: 301-496-5751
      800 #: 800-352-9424
      e-mail: braininfo@ninds.nih.gov
      Home page: http://www.ninds.nih.gov/
    • Sj?ldne 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
      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 02445-5815
      Phone #: 617-277-5667
      800 #: 800-767-4845
      e-mail: uk@vhl.org
      Home page: http://www.vhl.org



    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