You are warmly invited to join our support group for individuals diagnosed with Stickler syndrome. This group offers a welcoming space to connect with others who understand your experiences and share valuable resources and information.

Join us every first Wednesday of the month at 8:00 PM Eastern Time to share stories, find support, and build community. We look forward to seeing you there and creating a supportive environment together!

This group is for adults aged 18-50 with Marfan syndrome or a related condition. Participants have the opportunity to connect with others with a similar diagnosis for support and sharing of resources and information. This group meets on the 1st Thursday of every month at 5:00 PM Eastern.

Join the Walk for Victory movement! 

Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. 

Together, we raise awareness and help families get the best medical care from leading experts. 

Together, we help fund events and programs that improve the lives of our community: support groups, symposiums, conferences, Camp Victory for kids, life-saving research, and more! 

YOU GET IT…

Let’s do it TOGETHER!

1^st 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.*

In honor of those who observe Yom Kippur, we are changing the dates of the two support groups initially scheduled during the holiday. Please note the following date change: Stickler Connect has been moved to October 8, at the usual time.

You are warmly invited to join our support group for individuals diagnosed with Stickler syndrome. This group offers a welcoming space to connect with others who understand your experiences and share valuable resources and information.

Join us every first Wednesday of the month at 8:00 PM Eastern Time to share stories, find support, and build community. We look forward to seeing you there and creating a supportive environment together!

In honor of those who observe Yom Kippur, we are changing the dates of the two support groups initially scheduled during the holiday. Please note the following date change: Marfan Connect has been moved to October 9 at the usual time.

This group is for adults aged 18-50 with Marfan syndrome or a related condition. Participants have the opportunity to connect with others with a similar diagnosis for support and sharing of resources and information. This group meets on the 1st Thursday of every month at 5:00 PM Eastern.

Please Note: Due to our scheduling conflicts with our Conference in Atlanta, this group will meet on Thursday July 3, 2025 at 7pm EST. (instead of Thursday July 10, 2025)

If you have been diagnosed 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

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 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.

This group meets on the 2nd Tuesday of every month at 6:00 PM Eastern.

Are you a parent or guardian of a child with early onset (previously called neonatal or infantile) Marfan syndrome? 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 these conditions. This diagnosis is generally reached by the child having severe symptoms of Marfan syndrome at birth or shortly thereafter.
This group meets on the second Tuesday of every month at 8 pm EST.

This webinar will highlight life with Stickler syndrome from clinical and lived experience viewpoints. Dr. Taran Youssefian Blakstvedt, a licensed clinical psychologist at the TRS National Resource Centre for Rare Disorders in Norway, will share preliminary findings from her ongoing research on quality of life in individuals with Stickler syndrome. In addition, three community members will share their personal experiences and discuss how they navigate life with Stickler syndrome.