Filtering by: Connection
Coping with Grief and Loss
Feb
10
6:00 PM18:00

Coping with Grief and Loss

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.

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Support for Parents/Guardians of Children w/Marfan, LDS, related conditions
Feb
18
7:00 PM19:00

Support for Parents/Guardians of Children w/Marfan, LDS, related conditions

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.

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Conexiones: Estamos juntos (impartido en español)
Feb
18
7:30 PM19:30

Conexiones: Estamos juntos (impartido en español)

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.

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Coping with Grief and Loss
Mar
10
6:00 PM18:00

Coping with Grief and Loss

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.

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Support for Parents/Guardians of Children w/Marfan, LDS, related conditions
Mar
18
7:00 PM19:00

Support for Parents/Guardians of Children w/Marfan, LDS, related conditions

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.

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Conexiones: Estamos juntos (impartido en español)
Mar
18
7:30 PM19:30

Conexiones: Estamos juntos (impartido en español)

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.

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Kentucky Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS
Mar
28
8:00 AM08:00

Kentucky Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS

  • S. Randolph Scheen Family Conference Center Norton Children’s Hospital (map)
  • Google Calendar ICS

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.

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Camp Victory for Kids: Georgia 2026
Jul
5
to Jul 10

Camp Victory for Kids: Georgia 2026

Don’t miss out on this opportunity for your child/children, ages 7-16, to attend Camp Victory for Kids. This five-night camp is designed for kids with Marfan, VEDS, Loeys-Dietz, and related syndromes and their siblings to participate in a traditional overnight camp in a safe and accessible setting. Give your kid(s) the gift of friendship, independence, and memories to last a lifetime.

Thanks to the support of our generous donors, including Camp Twin Lakes, registration fees have been significantly discounted. Scholarships are available to cover the registration fee, which includes lodging, meals, and activities.

Registration and scholarship applications coming soon!

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Camp Victory for Kids: California 2026
Jul
26
to Jul 31

Camp Victory for Kids: California 2026

  • Sierra Nevada Journeys (map)
  • Google Calendar ICS

Don’t miss out on this opportunity for your child/children, ages 7-16, to attend Camp Victory for Kids. This five-night camp is designed for children with Marfan, VEDS, Loeys-Dietz, and related syndromes, as well as their siblings, to participate in a traditional overnight camp in a safe and accessible setting. Give your kid(s) the gift of friendship, independence, and memories to last a lifetime.

Thanks to the generosity of our donors, registration fees have been significantly discounted. Scholarships are available to cover the cost, which includes lodging, meals, and activities.

Registration and scholarship applications coming soon!

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Camp Victory for Families: Georgia 2026
Sep
25
to Sep 27

Camp Victory for Families: Georgia 2026

Join us for this exciting opportunity to meet other families impacted by Marfan, VEDS, Loeys-Dietz, and related syndromes. Enjoy your time with your entire family, participating in traditional camp activities in a safe and accessible environment. Registration fees have been significantly discounted thanks to the support of our generous donors, including Camp Twin Lakes. Scholarships are available to cover the registration fee, which includes lodging, meals, and activities.

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Camp Victory for Families: California 2026
Oct
23
to Oct 25

Camp Victory for Families: California 2026

Join us for this exciting opportunity to meet other families impacted by Marfan, VEDS, Loeys-Dietz, and related syndromes. Enjoy your time with your entire family, participating in traditional camp activities in a safe and accessible environment.

Registration fees have been significantly discounted thanks to the support of our generous donors, especially Keck Medicine of USC Cardiac and Vascular Institute. Scholarships are available to cover the registration fee, which includes lodging, meals, and activities.

Registration and scholarship applications coming soon!

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Conexiones: Estamos juntos (impartido en español)
Jan
21
7:30 PM19:30

Conexiones: Estamos juntos (impartido en español)

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.

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Support for Parents/Guardians of Children w/Marfan, LDS, related conditions (Copy)
Jan
21
7:00 PM19:00

Support for Parents/Guardians of Children w/Marfan, LDS, related conditions (Copy)

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.

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Coping with Grief and Loss
Jan
13
6:00 PM18:00

Coping with Grief and Loss

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.

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Conexiones: Estamos juntos (impartido en español)
Dec
17
7:30 PM19:30

Conexiones: Estamos juntos (impartido en español)

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.

View Event →
Support for Parents/Guardians of Children w/Marfan, LDS, related conditions
Dec
17
7:00 PM19:00

Support for Parents/Guardians of Children w/Marfan, LDS, related conditions

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.

View Event →
Coping with Grief and Loss
Dec
9
6:00 PM18:00

Coping with Grief and Loss

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.

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Coping with Grief and Loss
Nov
11
6:00 PM18:00

Coping with Grief and Loss

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.

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Uncorked 2025
Nov
11
6:00 PM18:00

Uncorked 2025

Raise a glass with us at UnCorked, our annual wine tasting fundraiser, on Monday, November 11th, from 6:00–9:00 PM at The Metropolitan Club. Together, we’ll enjoy a memorable evening while supporting the life-saving mission of The Marfan Foundation—bringing hope and brighter futures to those affected by Marfan syndrome, Loeys-Dietz syndrome, VEDS, and related genetic aortic and vascular conditions. Cheers to connection, community, and a future full of hope!

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Camp Victory for Families: California 2025
Oct
24
to Oct 26

Camp Victory for Families: California 2025

Join us for this exciting opportunity to meet other families impacted by Marfan, VEDS, Loeys-Dietz, and related syndromes. Have fun with your entire family, participating in traditional camp activities in a safe, accessible environment.

Registration fees have been significantly discounted thanks to the support of our generous donors, especially Keck Medicine of USC Cardiac and Vascular Institute. Scholarships are available to cover the registration fee, which includes lodging, meals, and activities. To apply for financial support, please click here.

Scholarship applications for this camp are due September 1.

Registration Cut-off Date: September 26

Register

Thank you to our CA Camp Victory sponsor:

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