• ORGANIZATION PROFILE
  • National Marfan Foundation National Marfan Foundation

Causes

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(40.839268,-73.70744)
 

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Mission Statement

The National Marfan Foundation, founded in 1981, is a non-profit voluntary health organization dedicated to saving lives and improving the quality of life for individuals and families affected by Marfan syndrome and related disorders.

The Foundation accomplishes these goals through:

Research-Promoting research to improve diagnosis and treatment and to find a cure through:

  • A grant and fellowship program for all Marfan-related disciplines
  • Advocacy for federal funding and policies that support the NMF mission
  • Medical and Scientific Symposia
  • Partnerships with government agencies and other voluntary health organizations

Education-Providing accurate and up-to-date information about Marfan syndrome and related disorders to:

  • Patients and families
  • Health care professionals
  • The general public

Support Services-Helping individuals and families with Marfan syndrome and related disorders through:

  • The NMF Information and Resource Center, which provides access to personalized service through a toll-free information line, 1-800-8-MARFAN, and email
  • The National Volunteer Network, consisting of Chapters, Network Groups, Support Groups, and individual volunteers, which carries out the NMF mission at the local level
  • The NMF Annual Conference
  • The NMF newsletter, Connective Issues

Description

The National Marfan Foundation (NMF) 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 NMF website, medical professional and patient education and public awareness programs, advocacy, and the research grant and fellowship grant programs.

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

Website

http://www.marfan.org

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