Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids’ activities, and a short, non-competitive walk.

Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.

Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids’ activities, and a short, non-competitive walk.

The Memorable Moments Luncheon is a special event designed to highlight and celebrate significant programs that make a difference in the community. Led by Co-Chairs Alix Jennings & Barbara Lerman, the luncheon will highlight three key programs: Camp Victory, The Marfan Foundation Annual Conference, and The Sydney Lerman Hospitality Program. This luncheon aims to bring together supporters, volunteers, and stakeholders to share the impact these initiatives have had and continue to have in the community. Throughout the event, attendees will learn about the successes, stories, and future goals of these programs while enjoying a memorable and inspiring gathering. The luncheon promises to be an opportunity for connection, reflection, and hope, as well as a way to support and celebrate these important causes.

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.

Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.

Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.

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.

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.

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.

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.

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 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.

Have you lost a loved one to Marfan syndrome or a related condition? Grief is a long and difficult process. Everyone experiences grief differently, but talking with others who can relate to what you are going through can be very helpful. If you have lost a loved one to Marfan syndrome or a related disorder and would like to connect with others who know what you are going through, please sign up for this group.

Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids’ activities, and a short, non-competitive walk.

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.

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 Dr. Jeffrey Kim, D.D.S and Julie Christensen, M.S., who will share current insights into audiology and otology as they relate to individuals living with LDS.

Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids’ activities, and a short, non-competitive walk.

The Marfan Foundation and Norton Children’s Heart Institute present an educational opportunity for individuals and families living with Marfan, Loeys-Dietz, VEDS, and related conditions. This informative and engaging event will provide the latest updates on treatment and quality of life issues, and includes opportunities to network with the speakers and connect with other people in the area who are also living with these conditions.

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.

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.

Wear Blue, Give Green! Join us for LDS Awareness Day of Giving.

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.

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 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.