Find all needed information about Marfans Syndrome Support Organizations. Below you can see links where you can find everything you want to know about Marfans Syndrome Support Organizations.
https://www.marfan.org/get-involved/connect-community/local-community
What is Marfan Syndrome? What are Related Conditions? What are the Signs? How is the Body Affected? WHAT IS NEONATAL MARFAN SYNDROME? Current Research; What to Expect. ... Local Support & Groups. Other Ways to Get Support. Phone Support Groups Find a Mentor Become a Mentor Join our Online Community Ask Our Help Center . Can't Find a Group?
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/resources-answers/patients-families/phone-support-groups
Phone support groups are a great way to connect with others in the Marfan syndrome and related condittions community. Groups meet once a month for six months. Phone support group …
https://www.thinkgenetic.com/diseases/marfan-syndrome/organizations/6918
There are many good support groups for people with Marfan syndrome. These include: The Marfan Foundation; The Marfan Trust charity; International Federation of Marfan Syndrome Organizations; Marfan Syndrome Support Group Ireland; Marfan Association UK
https://www.marfan.org/resources/patients
The Marfan Foundation (the “ Foundation”) is a health advocacy organization. The Foundation does not provide medical advice or treatment. We are not a health care provider. It is important to realize that information provided by the Foundation is not meant as a replacement for proper care from a …
https://www.marfan.org/secure/community-support
We can connect you with local community groups, which are located all over the country. Many groups focus on social and support events, while other groups also hold fundraising and awareness events. You can get involved in all or some of the events held by your local group. In some areas, we have individual support volunteers rather than a group.
https://www.marfan.org/about-us/how-we-help
Special resources are available for children, teens, parents, teachers, nurses, and other specialized groups. Our active volunteer network organizes support for families who are dealing with Marfan syndrome and raises money and awareness in local communities nationwide.
https://www.dailystrength.org/group/marfan-syndrome
Dec 24, 2016 · Marfan Syndrome Support Group Marfan syndrome is a connective tissue disorder characterized by unusually long limbs. The most serious conditions associated with Marfan syndrome primarily involve the cardiovascular system.
http://www.marfanworld.org/
Marfan World, which was formally known as the International Federation of Marfan Syndrome Organizations was founded in 1992 at the Second International Symposium on Marfan Syndrome in San Francisco, California. The mission of Marfan World is to: Share current, accurate information about the Marfan syndrome and related conditions worldwide
https://rarediseases.org/organizations/marfan-foundation/
The Marfan Foundation is a voluntary, non-profit organization dedicated to the support and education of people affected by Marfan syndrome and related connective tissue disorders.
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