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Diseases

Genetic and Rare Diseases Information Center (GARD)

Von Hippel-Lindau disease


Other Names for this Disease
  • VHL syndrome
  • VHL
  • Von Hippel-Lindau disease
  • Von Hippel-Lindau syndrome
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Organizations

Organizations Supporting this Disease

  • Action to Cure Kidney Cancer (ACKC)
    150 West 75th St.
    Suite 4
    New York, NY 10023 USA
    Telephone: 212-714-5341
    E-mail: http://www.ackc.org/contact-us/
    http://www.ackc.org/

  • Cancer.net
    Toll-free: 888-651-3038
    Telephone: 571-483-1780
    Fax: 571-366-9537
    E-mail: contactus@cancer.net
    Website: http://www.cancer.net/

  • Kidney Cancer Association
    1234 Sherman Avenue
    Suite 203
    Evanston, IL 60202-1375
    Toll-free: 800-850-9132;
    Telephone: 312-436-1455
    Fax: 512-327-7002
    E-mail: office@kidneycancer.org
    http://KidneyCancer.org

  • Pancreatic Cancer Action Network
    2141 Rosecrans Ave, Suite 7000
    El Segundo, CA 90245
    Toll-free: 877-272-6226
    Telephone: 310-725-0025
    Fax: 310-725-0029
    E-mail: info@pancan.org
    http://www.pancan.org/

  • Rare Cancer Alliance
    1649 North Pacana Way
    Green Valley, AZ 85614
    Telephone: 520-625-5495
    Website: http://www.rare-cancer.org

  • The VHL Alliance
    2001 Beacon Street
    Suite 208
    Boston, MA 02135-7787
    Toll-free: 800-767-4845
    Fax: 858-712-8712
    E-mail: info@vhl.org
    http://www.vhl.org

Social Networking Websites

  • RareConnect has an online community for patients and families with this condition so they can connect with others and share their experiences living with a rare disease. The project is a joint collaboration between EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders).

Organizations Providing General Support

  • American Cancer Society
    250 Williams Street NW
    Atlanta, GA 30329
    Toll-free: 800-227-2345
    Website: http://www.cancer.org

Other Names for this Disease
  • VHL syndrome
  • VHL
  • Von Hippel-Lindau disease
  • Von Hippel-Lindau syndrome
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.