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The Marfan Foundation

Last Update:3/13/2018
Contact:Susan Leshen
Title:Sr Dir. of Patient& Program Services, Volunteers
Address:22 Manhasset Avenue
Port Washington, NY 11050
County:Out of state
Phone:516-883-8712 ext 122
Toll Free:800-862-7326
Fax:516-883-8040
TDY:
E-Mail:
Website:www.marfan.org
Mission

The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and related disorders.

  • We pursue the most innovative research and make sure that it receives proper funding.
  • We create an informed public and educated patient community to increase early diagnosis and ensure life-saving treatment.
  • We provide relentless support to families, caregivers, and healthcare providers.
Program Description

The Foundation accomplishes these goals through:

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

Education - Providing accurate and up-to-date information about Marfan syndrome and related disorders to patients and families, health care professionals, and the general public.

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

  • The Marfan Foundation 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 Foundation's mission at the local level
  • The Marfan Foundation Annual Conference
  • The Marfan Foundation newsletter, Connective Issues
  • Our website
Financial
Optional membership. We also accept donations.
Services
Genetic Disorders
Information & Referral
Parent to Parent/Matching
Rare Disorders
Counties Serviced
Nationwide
ABOUT SPECIAL KIDS RESOURCE DIRECTORY
7172 Graham Road, Suite 100, Indianapolis, IN 46250 E-Mail: familynetw@aboutspecialkids.org

As a matter of policy, About Special Kids does not specifically endorse any of the resources contained on our website or in our information packets. Resources are supplied for information purposes only and ASK recommends that families explore all options for assistance before making an informed choice.