Upcoming Events

Events
Coping with Grief and Loss
Apr 14
Connection, Virtual Support Groups
Coping with Grief and Loss
Connection, Virtual Support Groups

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.

Connection, Virtual Support Groups
Support for Parents/Guardians of Children w/Marfan, LDS, related conditions
Apr 15
Connection, Virtual Support Groups
Support for Parents/Guardians of Children w/Marfan, LDS, related conditions
Connection, Virtual Support Groups

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.

Connection, Virtual Support Groups
Conexiones: Estamos juntos (impartido en español)
Apr 15
Connection, Virtual Support Groups, Espanol
Conexiones: Estamos juntos (impartido en español)
Connection, Virtual Support Groups, Espanol

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.

Connection, Virtual Support Groups, Espanol
Newly Diagnosed & Those Seeking Diagnosis Group
Apr 16
Virtual Support Groups, Education
Newly Diagnosed & Those Seeking Diagnosis Group
Virtual Support Groups, Education

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.

Virtual Support Groups, Education
50+ Support Group
Apr 17
Connection, Virtual Support Groups
50+ Support Group
Connection, Virtual Support Groups

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.

Connection, Virtual Support Groups
Simposio virtuale sulle sindromi di Marfan, Loeys-Dietz, VEDS e Stickler
Apr 18
Education, Connection
Simposio virtuale sulle sindromi di Marfan, Loeys-Dietz, VEDS e Stickler
Education, Connection
Education, Connection
Teen Talk
Apr 20
Connection, Virtual Support Groups
Teen Talk
Connection, Virtual Support Groups

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.

Connection, Virtual Support Groups
Kids Club
Apr 21
Connection, Virtual Support Groups
Kids Club
Connection, Virtual Support Groups

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.

Connection, Virtual Support Groups
Walk for Victory - Tampa
Apr 25
Connection, Walks
Walk for Victory - Tampa
Connection, Walks

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.

Connection, Walks
Walk for Victory - Raleigh
Apr 25
Connection, Walks
Walk for Victory - Raleigh
Connection, Walks

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.

Connection, Walks
LDS International Connect Support Group (Copy)
Apr 27
Virtual Support Groups
LDS International Connect Support Group (Copy)
Virtual Support Groups

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.

Virtual Support Groups
Memorable Moments Luncheon
May 3
Memorable Moments Luncheon

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.