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 the sharing of resources and information. This group meets on the 1st Thursday of every month at 5:00 PM Eastern.

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.*

Insights from the LDS Natural History Study at NIH: Audiology and Otology offers an in-depth look at hearing and ear-related findings emerging from the Loeys-Dietz Syndrome (LDS) Natural History Study conducted at the National Institutes of Health. This webinar will be led by NIH experts Jeffrey Kim, MD, and Julie Christensen, M.S., who will share current insights into audiology and otology as they relate to individuals living with LDS.

Participants will learn about how hearing and balance may be affected in LDS, the types of assessments used in the Natural History Study, and what researchers are discovering about patterns, prevalence, and clinical implications. The presenters will also discuss why monitoring auditory and otologic health is important for individuals with LDS and how research findings may help inform future care and awareness. This session is designed for individuals with LDS, caregivers, advocates, and clinicians seeking a deeper understanding of the auditory aspects of the condition and the role of ongoing research at NIH.

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

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.

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 pm EST.

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¿Eres un adulto que vive con el síndrome de Marfan o una condición relacionada, o cuidas de alguien que lo tiene? Únete a nuestro grupo de apoyo para conectar con otras personas. Ya sea que estés buscando comunidad, apoyo emocional o recursos útiles, este grupo te ofrece un espacio acogedor.

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

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 3rd Friday of every month at 3:00 PM Eastern.