The Marfan Foundation
- 22 Manhasset Avenue
Port Washington, NY 11050
- Click to visit website
The Marfan Foundation, established in 1981, creates a brighter future for everyone affected by Marfan syndrome and related disorders by pursuing the most innovative research and making sure that it receives proper funding; creating an informed public and educated patient community; and providing relentless support to families, caregivers, and healthcare providers.
Through its research grant program, the Foundation has strengthened a growing community of expert researchers committed to victory over Marfan syndrome and related disorders. It pushes the government to fund the research that will improve and save lives.
The Foundation provides a supportive community for everyone affected by Marfan syndrome and related disorders, with a help center staffed by a social worker and licensed nurse, special resources for children, teens, parents, teachers, nurses, and other specialized groups; an annual family conference and free clinic; and an active volunteer network.
The Foundation always has the latest and most accurate information, and educates everyone—from patients and families to medical professionals and the general public—about Marfan syndrome and related disorders. Information is available on its website, Marfan.org, as well as through its help center, 800-8-MARFAN, ext. 126.
The Foundation is a founding member of the International Federation of Marfan Syndrome Organizations, which strengthens the Marfan community worldwide.
The Foundation will not rest until it has achieved victory—a world in which everyone with Marfan syndrome or a related disorder receives a proper diagnosis, gets the necessary treatment, and lives a long and full life.
This organization has completed the National Health Council’s Standards of Excellence Certification Program and meets the highest standards of accountability, ethical practice, organizational effectiveness, and good public stewardship.
To learn more, click on the links below.
Activities and Accomplishments
Board of Directors and Staff