Your browser does not support javascript:   Search for gard hereSearch for news-and-events here.

Diseases

Genetic and Rare Diseases Information Center (GARD)

Print friendly version

Marfan syndrome


Other Names for this Disease
  • Contractural arachnodactyly
  • Marfan syndrome type 1
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

  • Canadian Marfan Association
    Centre Plaza Postal Outlet
    128 Queen Street South
    P.O. Box 42257
    Mississauga Ontario L5M 4Z0
    Canada
    Toll-free: 866-722-1722
    Telephone: 905-826-3223
    Fax: 905-826-2125
    E-mail: info@marfan.ca
    Website: http://www.marfan.ca

  • Marfan Association UK
    Rochester House
    5 Aldershot Road
    Fleet
    Hampshire
    GU51 3NG
    United Kingdom
    Telephone: 44 01252 810472
    Fax: 44 01252 810473
    E-mail: contactus@marfan-association.org.uk
    Website: http://www.marfan-association.org.uk/

  • National Marfan Foundation
    22 Manhasset Avenue
    Port Washington, NY 11050
    Toll-free: 800-8-MARFAN (800-862-7326)
    Telephone: 516-883-8712
    Fax: 516-883-8040
    E-mail: staff@marfan.org
    Website: http://www.marfan.org

  • Scoliosis Research Society
    555 East Wells Street, Suite 1100
    Milwaukee, WI 53202-3823
    Telephone: 414-289-9107
    Fax: 414-276-3349
    E-mail: info@srs.org
    Website: http://www.srs.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.
  • RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.

Organizations Providing General Support