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Marfan syndrome is a life-threatening genetic condition, and an early, accurate diagnosis is essential, not only for people with Marfan syndrome, but also for those with related conditions. Knowing the signs of these conditions can save lives. Learn more.
https://www.marfan.org/get-involved/community
CONNECT: Our Online Community. Our online community allows you to connect with people in the Marfan syndrome and related disorders community from the comfort of your home. You can meet people, chat with people who have the same interests, post questions, and more.
https://www.marfan.org/resources/patients
We offer phone and online support groups for families coping with Marfan syndrome and related disorders. We can help you find local support. Our annual family conference brings together the entire community for four days each year to learn about the latest research, get questions answered by the leading experts, and form new friendships.
https://marfansresource.weebly.com/local-support-recreation--community-resources.html
local support NMFConnect is a social network created by the National Marfan Foundation that is similar to other social networking websites such as Facebook and Twitter. NMFConnect creates a worldwide support group for people living with Marfan syndrome and similar disorders to discuss and share experiences, as well as create a sense of community.
https://my.php.com/resource/national-marfan-foundation-nmf
The National Volunteer Network enables the NMF to extend its reach into local communities across the country. The NMF is a member of the International Federation of Marfan Syndrome Organizations (IFMSO), which serves to strengthen the Marfan community worldwide.
https://www.freeclinics.com/det/ny_The_National_Marfan_Foundation
The National Marfan Foundation is a non-profit voluntary health organization dedicated to saving lives and improving the quality of life for individuals and families affected by the Marfan syndrome and related disorders. 1) Educating patients, family members and …Location: 22 Manhasset Ave, Port Washington, 11050, NY
http://www.kumc.edu/gec/support/marfan.html
Stanford University Center for Marfan Syndrome Adult Congenital Heart Network , Canadian Adult Congenital Heart Network, Toronto Congenital Cardiac Centre for Adults, and International Society Of Adult Congenital Cardiac Disease
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