National Marfan Foundation

From WikiGenetics

Contents 1 Background 2 Website 3 Recommended Sites 4 Links to Other Organizations

[edit] Background

The National Marfan Foundation, founded in 1981, seeks to improve the quality of life for individuals and families affected by Marfan syndrome and related disorders. They are based in Port Washington, NY. Twenty-four full- and part-time staff educate patients, family members, and the health care community about the syndrome; advocate and fund clinical and molecular research into the syndrome’s detection and treatment; and provide national support services for patients and relatives to share experiences and improve their medical care. The National Marfan Foundation regularly reaches 40,000 patients, families, professionals, and supporters. Join them in New York City for the HeARTworks Gala, April 17, 2008

[edit] Website

http://www.marfan.org

[edit] Recommended Sites

[edit] Links to Other Organizations

   * Advocacy Organizations
   * Academic Institutions
   * Biotech Companies
   * Government Agencies
   * Genetic Alliance
   * Laboratories
   * Law/Consulting Firm
   * Patient Registries
   * Policy Organizations/Think Tanks
   * Professional Societies
   * Other