There are multiple ways individuals and families living with Marfan syndrome or a related disorder can find support in their region and Nationally.

Community Groups:

There are community volunteer groups throughout the country that you can join to get support and get more involved with the Foundation. There are currently three different types of community groups, Chapters, Network Groups, and Support Groups. All of the groups provide support. Some groups organize additional activities such as awareness events and fundraisers. Find a community group in your region.  

Community Support Volunteers:

Support Volunteers are individuals who are diagnosed with Marfan syndrome or a related disorder or have a family member such as a child or spouse who is diagnosed with Marfan syndrome or a related disorder. These volunteers are people who are willing to share the knowledge they have gained about Marfan syndrome and related disorders through their own experiences with you via phone and email. They are not medical professionals or connective tissue disorder experts but they can provide a wealth of information and support. Find a Community Support Volunteer in your region.

Online Support:

There are two ways you can get support online, NMFconnect (the National Marfan Foundation's own online community) and Facebook. Both are great ways to meet other individuals and families living with Marfan syndrome or a related disorder. By joining NMFconnect you can participate in over 50 different online support groups, post a question or comment to the forum, share photos and videos, blog, or "chat." The Foundation's Facebook page is also a great way to meet others, ask questions, share information and learn about events happening Nationally and locally.

National Helpline/Information Resource Center:

The Foundation Helpline is staffed by a Registered Nurse and a Licensed Clinical Social Worker. You can contact the Helpline with your medical and social questions, to find resources and to get support by calling 800-8-MARFAN ext. 126 or emailing support@marfan.org.

Find Support in Your Region
To find support in your region click on the appropriate link below. We do not have volunteers in every state at this time but that is our goal. If you would like to help us meet our goal by becoming a volunteer click here for more information.