Virtual support groups are a great way to connect with others in the Marfan syndrome and related conditions community.
Groups meet once a month through easy-to-use online technology. If you are unable to access the meeting through a desktop or laptop computer, tablet, or cell phone, you can easily call in and participate via phone. Registration is free, but required.
Register for the group or groups you’d like to attend and you’ll receive the link via email.
Coping with COVID Stress
Are you feeling stress and anxiety related to COVID-19? Would you like to connect with others who are feeling the same way? Please join us to explore ways to increase your coping skills and decrease your anxiety by sharing your thoughts in a safe non-judgmental environment.
This group meets every other Monday at 8:00 PM Eastern.
Join us for the Kids Club, a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions. Kids Club provides opportunities for social interaction and connection with others who have a similar diagnosis.
This group meets on the third Tuesday of every month from 7-8 PM Eastern.
Newly Diagnosed & Those Seeking Diagnosis
Are you or a loved one seeking diagnosis or recently diagnosed with Marfan syndrome or a related condition? If you would like to connect with others who are just starting out on this medical journey, this group is for you.
This group meets on the third Thursday of every month at 5:00 PM Eastern.
This support group is for people with Marfan syndrome or a related condition who are interested in exploring various ways to deal with pain.
This group meets on the fourth Thursday of every month at 5:00 PM Eastern.
Are you diagnosed with Marfan syndrome or a related condition? Are you 50 years old or older? Would you like to connect with others in your age group? If so, this group is for you.
This group meets on the third Friday of every month at 3:00 PM Eastern.
Are you diagnosed with Marfan syndrome or a related disorder? Are you between 20 and 50 years old? Would you like to connect with others living with Marfan syndrome or a related disorder for support and to share resources and information? If so, this group is for you.
This group meets on the first Thursday of every month at 5:00 PM Eastern.
Coping with Grief and Loss
Grief is a long and difficult process. Everyone experiences grief differently, but talking with others who can relate to what you are going through can be very helpful. If you have lost a loved one to Marfan syndrome or a related disorder, or are coping with the loss of a member of the community, and would like to connect with others who know what you are going through, please sign up for this group.
This group meets on the second Tuesday of every month at 6:00 PM Eastern.
VEDS Support Group
If you have been diagnosed with VEDS, this group is specifically for you! This is an opportunity to meet others with VEDS and talk about the challenges we all face day-to-day. If you have not yet been diagnosed with VEDS, please check out the Seeking Diagnosis group here.
This group meets on the first Tuesday of every month at 8:00 PM Eastern.