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 6 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. Katie Wright, director of the VEDS division, is the host.
Coping with 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 and family members to VEDS. It is a safe place for us to discuss our emotions, honor the memory and joy of our loved ones, and move forward together. Susan Leshen, LCSW, senior director of patient and program services for The Marfan Foundation, is the host.
VEDS Parents – 4th Wednesday of each month at 8 pm Eastern Time
If you are a parent 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.
* The September 2020 meeting will be on Thursday, September 24th.
*Note, if you are a caregiver of an individual with VEDS and want to know if this group is right for you, email Katie at kwright@TheVEDSMovement.org
VEDS Partners and Spouses- 4th Tuesday of each month at 6 pm Eastern Time, beginning on March 24
This group is for partners, spouses, and significant others of individuals diagnosed with VEDS to talk about their experience with others with similar experiences. Susan Leshen, LCSW and senior director of patient and program services for The Marfan Foundation, hosts this group.
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 support, reach out to Susan Leshen, LCSW, senior director of patient and program services for The Marfan Foundation, for individual support at sleshen@marfan.org.
If you have any questions or would like to make suggestions for other Vascular Ehlers-Danlos Syndrome support groups, please contact Katie at kwright@TheVEDSMovement.org
You can also meet other families affected by VEDS at Annual Conference!