Marfan Foundation

Cause Area

  • Board Development
  • Children & Youth
  • Community
  • Health & Medicine
  • People with Disabilities

Location

22 MANHASSET AVEPORT WASHINGTON, NY 11050 United States
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Organization Information

Mission Statement

The Marfan Foundation is a nonprofit that fights for victory over Marfan syndrome and related disorders. Marfan syndrome is a life-threatening genetic disorder that most seriously affects the heart, blood vessels, and eyes so we do everything possible, including research, advocacy, and education, to make sure people can live longer, fuller lives.

Description

The Marfan Foundation is the primary source of accurate and up-to-date information on Marfan syndrome and related disorders. It was founded in 1981 by a handful of individuals seeking help to understand the complex condition affecting themselves and their loved ones.

The Foundation has grown and significantly increased its education, support and research programs. Professional staff oversee the Information Resource Center, which provides personalized service through a toll-free information line (800-8-MARFAN) and the website (www.marfan.org), medical professional and patient education and public awareness programs, advocacy, and the research grant and fellowship grant programs.

The heart and soul of the Marfan Foundation is our Volunteer Network, comprised of Chapters, Local Groups, Support Groups and individual volunteers that allows the Foundation to extend its reach into local communities across the country.

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