A Time to Talk: Monday Matters

Join others in our connective tissue condition communities to share concerns and discuss issues related to everyday life. You will feel supported, heard, and enjoy the time spent with others.

This group meets every other Monday at 8:00 PM Eastern.

Kids Club

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.

Young Adults

Have you been diagnosed with Marfan syndrome, VEDS, Loeys-Dietz syndrome or another related condition? Are you between the ages of 18 and 30?  Would you like to connect with others in your age group? If so, this support group is for you.

This group meets on the first Wednesday of every month at 7 PM Eastern.

Marfan Connect

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.

LDS Connect

If you have been diagnosed with or are the caregiver of someone with LDS, this group is specifically for you! This is an opportunity to meet others with LDS and talk about the challenges we all face day-to-day. If you have not yet been diagnosed with LDS, please check out the Seeking Diagnosis group here.

Conexiones: Estamos juntos (impartido en español)

Conexiones: Grupo de apoyo virtual para establecer conexiones con otras personas que tienen condiciones del tejido conectivo. (impartido en español). Una vez al mes

Presentado por Kathleen Bolton del Centro de Ayuda y Recursos, fundación Marfan

El grupo se reúne el tercer miércoles de cada mes de 7:30 a 8:30 p.m., hora del este.

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.

Pain Management

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 7:00 PM Eastern.

50+ Support

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.

Parents/Guardians of Children – Marfan, LDS, related conditions

Are you are a parent or guardian of a child with Marfan syndrome, Loeys-Dietz syndrome or a related connective tissue condition? Is your child 18 years old and younger? If so, we invite you to join other parents to discuss the challenges of raising a child with one of these conditions.

This group meets on the third Wednesday of every month at 7:00 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 Groups

If you are impacted by VEDS, these groups are specifically for you! They are an opportunity to meet others impacted by 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.

Click the button below to find more details, dates, and times.

Teen Game Night

Join us for a virtual game night! Teens ages 13-18 are invited to register to join in the fun. We will be playing games using Kahoot!, Among Us, and the Jackbox game series. Please note: to do so, you will need TWO devices. One is to join the Zoom call with video, and the second is to play the game.

Before the games begin, we will have a check-in/intro session to get acquainted, so make sure to put your camera on! Please send any questions to dnoe@marfan.org. See you there!

Each group will run for approximately 90 minutes and be held from 7:30-9:00 pm ET on the first Monday of each month. The group will be held on Zoom. Teens are expected to join on camera and participate for the duration of the group. Pre-registration and parental/guardian consent for the group is required.

Teen Talk

The Marfan Foundation is hosting a virtual group for Teens ages 13-18 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction with others with a similar diagnosis. The Teen Talk will include open conversations and connections on various appropriate topics and will be led by our staff member, Dominga Noe, and our volunteer leader, Peter Donato. This group is not designed to offer therapy or counseling but rather an opportunity to speak on the highs and lows of living with chronic conditions and be more connected with others in the same age group.

Each group will run for approximately 90 minutes and be held from 7:30-9:00 pm ET on the third Monday of each month. The group will be held on Zoom. Teens are expected to join on camera and participate for the duration of the group. Pre-registration and parental/guardian consent for the group is required.