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.

Simposio Internacional en Barcelona: Claves para una vida plena con Marfan, Loeys-Dietz, VEDS y Stickler. Este programa se celebrará íntegramente en español.

Las presentaciones, impartidas por expertos médicos de España y otros países, estarán dirigidas a personas y familias que conviven con estas condiciones. Los asistentes tendrán la oportunidad de hacer preguntas a los especialistas, así como de establecer contacto tanto con ellos como con otras personas que comparten una experiencia médica similar. Se ofrecerá desayuno y también contaremos con una comida especial titulada Creando Conexiones.

Las presentaciones generales abordarán los síndromes de Marfan, Loeys-Dietz, VEDS y Stickler. Además, habrá sesiones paralelas enfocadas específicamente a cada una de estas condiciones. La inscripción es gratuita, pero obligatoria.

SIMA dispondrá de un espacio independiente con actividades para niños de 5 a 12 años. La fecha límite de inscripción para los niños es el 15 de septiembre. Para más información, envíe un correo a secretaria@marfan.es.

Simposio Internacional en Barcelona: Claves para una vida plena con Marfan, Loeys-Dietz, VEDS y Stickler es presentado por La Fundación Marfan y SIMA (Asociación Síndrome de Marfan-España)

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.*

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!

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 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.

Are you or a loved one recently diagnosed with Marfan syndrome or a related condition? Are you or a loved one seeking a diagnosis? If you would like to connect with others who are just starting on this medical journey, this group is for you. This group meets on the 3rd Monday of every month at 2:00 PM EST.

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.