Upcoming Events
Have you been diagnosed with Loeys-Dietz syndrome? This group is a space to talk and connect with people in the community and share what you’re going through with others who understand. The group meets on the second Thursday of every month from 7-8 pm ET.
Join the Genetic Aortic Network on December 12 at 11:00 a.m. ET for a webinar on highlights from “Recommendations for Design, Execution, and Reporting of Studies on Experimental Thoracic Aortopathy in Preclinical Models” (Arteriosclerosis, Thrombosis, and Vascular Biology, 2025).
Teens Together: A Night to Chat is a place for Teens ages 13-18. Join this virtual get-together to become a part of the conversation. Get to know other teens who with Marfan, LDS, VEDS, and related conditions to talk about life, laugh, and everything in between.
Join us for the Kids Club, a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction and connection with others who have a similar diagnosis.
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.
Conexiones: Grupo de apoyo virtual para establecer conexiones con otras personas que tienen condiciones del tejido conectivo. (impartido en español). Una vez al mes.
Presentado por Kathleen Bolton del Centro de Ayuda y Recursos, fundación Marfan
El grupo se reúne el tercer miércoles de cada mes de 7:30 a 8:30 p.m., hora del este.
Are you or a loved one recently diagnosed with Loeys-Dietz 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.
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.
The LDS International Connect is a support group for any person living with Loeys-Dietz Syndrome, as well as parents and caregivers of people with Loeys-Dietz Syndrome. This group is intended for community members living outside of the United States. It is conducted in English. The LDS International Connect meets on the 4th Monday of each month at 2 pm EST.
Have you been diagnosed with Marfan syndrome, VEDS, Loeys-Dietz syndrome or another related condition? Are you between the ages of 18 and 30? Would you like to connect with others in your age group? If so, this support group is for you.
Have you been diagnosed with Loeys-Dietz syndrome? This group is a space to talk and connect with people in the community and share what you’re going through with others who understand. The group meets on the second Thursday of every month from 7-8 pm ET.
nvitamos a pacientes y sus familias a unirse a nosotros en un día educativo sobre el síndrome de Marfan, el síndrome de Loeys-Dietz y el síndrome vascular de Ehlers-Danlos (VEDS). La cumbre de este año contará con presentaciones sobre los últimos avances en investigación y genética/planificación familiar. Además, expertos locales hablarán sobre cómo obtener atención médica en España, México, Colombia, Chile y Argentina. Además habrá espacio para responder sus preguntas. La Fundación Marfan ofrece esta cumbre de manera completamente gratuita. Será totalmente virtual y transmitida en línea, para que pueda acceder desde cualquier lugar del mundo. El enlace de Zoom se enviará después de registrarse.