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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Von Hippel-Lindau disease


Other Names for this Disease
  • VHL
  • VHL syndrome
  • Von Hippel-Lindau disease
  • Von Hippel-Lindau syndrome
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Organizations


Organizations Supporting this Disease

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

Social Networking Websites

  • DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
  • 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).
  • RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.

Organizations Providing General Support