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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Periventricular leukomalacia


Other Names for this Disease

  • PVL
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

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.
  • RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.

Organizations Providing General Support

  • Genetic Alliance
    4301 Connecticut Avenue NW
    Suite 404
    Washington, DC 20008-2369
    Telephone: 202-966-5557
    Fax: 202-966-8553
    E-mail: info@geneticalliance.org
    Website: http://www.geneticalliance.org/

  • National Dissemination Center for Children with Disabilities
    1825 Connecticut Ave NW, Suite 700
    Washington, DC 20009
    Toll-free: 800-695-0285
    Telephone: 201-884-8200
    TTY: 800-695-0285
    Fax: 202-884-8441
    E-mail: nichcy@fhi360.org
    Website: http://www.nichcy.org/

  • National Organization for Rare Disorders (NORD)
    55 Kenosia Avenue
    PO Box 1968
    Danbury, CT 06813-1968
    Toll-free: 800-999-6673 (voicemail only)
    Telephone: 203-744-0100
    TTY: 203-797-9590
    Fax: 203-798-2291
    E-mail: orphan@rarediseases.org
    Website: http://www.rarediseases.org

Other Names for this Disease
  • PVL
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.