Join one of the Vascular Ehlers-Danlos Syndrome support groups today!
These virtual support groups are a great way to connect with others in the Vascular Ehlers-Danlos Syndrome (VEDS) 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.
VEDS Connect
1st Tuesday of each month at 8 pm Eastern Time
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.
*Please note, every member wanting to join this VEDS Connect group should have a genetically confirmed diagnosis of VEDS to attend. We will request that you confirm that you have a VEDS diagnosis before admitting you to this group. We rely on your honesty to keep this a safe space for group attendees. If you do not have a genetically confirmed diagnosis of VEDS, please sign up for the Seeking Diagnosis and Newly Diagnosed group instead.*
Coping with Grief and Loss
2nd Tuesday of each month at 6 pm Eastern Time
This group discussion is dedicated to the challenges our community faces when we lose our beloved friends, community members, and family members to VEDS, Marfan, or Loeys-Dietz syndrome. It is a safe place for us to discuss our emotions, honor the memory and joy of our loved ones, and move forward together. This group is also open to anyone coping with loss in the community.
VEDS Parents and Guardians
4th Wednesday of each month at 8 pm Eastern Time
If you are a parent or guardian of a child with VEDS, we invite you to join other parents to discuss the challenges of raising a child with this condition. This group will be hosted by Jan Lynch, RN, director of The Marfan Foundation’s Help & Resource Center, and Abby DeLong, VEDS parent and patient advocate.
Parents of Adults with VEDS (18+)
2nd Wednesday of every other month at 7 pm Eastern Time
If you are a parent of an adult (18 years and older) with VEDS, we invite you to join other parents to discuss your experiences. This group will be hosted by Jan Lynch, RN, director of The Marfan Foundation’s Help & Resource Center.
VEDS Partners and Spouses
4th Tuesday of each month at 6 pm Eastern Time
This group is for partners, spouses, and significant others of individuals diagnosed with VEDS to talk about their experience with others with similar experiences.
Teen Game Night
1st Monday of each month at 7:30 pm Eastern Time
This is a teen group for teens ages 13-18 with VEDS, Marfan, Loeys-Dietz, or a related condition. Teens are invited to register to join in the fun. We will be playing games using the Jackbox game series.
Teens Together- A Night to Chat
3rd Monday of each month at 7:30 pm Eastern Time
This is a teen group for teens ages 13-18 with VEDS, Marfan, Loeys-Dietz, or a related condition. Teens are invited to register to join in for a talk with other teens they can relate to.
Kids Club
3rd Tuesday of each month at 7:00 pm Eastern Time
Kids Club is for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions. It is designed to increase opportunities for social interaction with others who have a similar diagnosis.
It will include fun, age-appropriate games and activities, such as Bingo, Would You Rather, Scavenger Hunt, and 5 Second Rule, and will be led by our social worker, Andrea Friedman, MSW. The group is not designed to offer therapy, counseling or advice, but rather an opportunity for participants to have fun and get connected with others in the same age group.
Participants must be between the ages of 9-12 and have a diagnosis of Marfan syndrome, VEDS, Loeys-Dietz syndrome, or a related genetic aortic and vascular condition. Parental or guardian consent must be provided.
Coping with COVID Stress
Every Other Monday at 8 pm Eastern Time
Are you feeling stress and anxiety related to COVID-19? Would you like to connect to others in the VEDS, Marfan, and LDS community 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.
Newly Diagnosed and Those Seeking Diagnosis
Third Thursday of each month at 5 PM Eastern Time
Are you or a loved one recently diagnosed with VEDS, Marfan syndrome or a related condition? Are you or a loved one seeking diagnosis? 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 3rd Thursday of every month at 5:00 PM Eastern.
Are you awaiting a diagnosis of VEDS?
If you have not yet been formally diagnosed with VEDS and either suspect you have it or are going through the evaluation process and need individual support, you can also reach out to our Help and Resource Center.