Filtering by: Connection
Support for Parents/Guardians of Children w/Marfan, LDS, related conditions
Jun
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)
Jun
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
Jul
8
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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Camp Victory for Kids: Georgia 2025
Jul
13
to Jul 18

Camp Victory for Kids: Georgia 2025

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.

This year, because of our 40th Conference in Atlanta leading up to camp (July 11-13), we will offer a bus for campers from the conference site (Hyatt Regency, Atlanta) to Camp Twin Lakes.

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. To apply for financial support, click here. Scholarship applications for this camp are due May 19.

Registration Cut-off Date: June 13

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Support for Parents/Guardians of Children w/Marfan, LDS, related conditions
Jul
16
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 →
Conexiones: Estamos juntos (impartido en español)
Jul
16
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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Camp Victory for Kids: California 2025
Jul
27
to Aug 1

Camp Victory for Kids: California 2025

  • 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 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.

Due to the California camp's more remote location, with support from Keck Medicine of USC Cardiac and Vascular Institute, transportation will be provided for those who need it, including flights from Southern California and a bus from a central pickup location in Northern California to the camp.

Thanks to the generosity of our generous donors, registration fees have been significantly discounted. Scholarships are available to cover the fee, which includes lodging, meals, and activities. To apply for financial support, please click here.

Scholarship applications for this camp are due June 2.

Registration Cut-off Date: June 27

Thank you to our CA Camp Victory sponsor:

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Coping with Grief and Loss
Aug
12
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
Aug
20
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
Sep
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.

View Event →
Camp Victory for Families: Georgia 2025
Sep
19
to Sep 21

Camp Victory for Families: Georgia 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, including Camp Twin Lakes. 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 July 28.

Registration Cut-off Date: August 22

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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

Thank you to our CA Camp Victory sponsor:

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Coping with Grief and Loss
Jun
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.

View Event →
Conexiones: Estamos juntos (impartido en español)
May
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.

View Event →
Support for Parents/Guardians of Children w/Marfan, LDS, related conditions
May
21
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
May
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.

View Event →
Conexiones: Estamos juntos (impartido en español)
Apr
16
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
Apr
16
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 →