Filtering by: Connection
Michigan Regional Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS
Apr
5
8:00 AM08:00
Connection, Education, Symposium

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

The Marfan Foundation and the University of Michigan’s MI-AORTA team present a full-day educational opportunity for individuals and families living with Marfan, Loeys-Dietz, VEDS, and related conditions. The event includes a Creating Connections luncheon, which enables attendees to network with the speakers and connect with other people in the area who also have their condition.

View Event →
Coping with Grief and Loss
Apr
8
6:00 PM18:00
Connection, Virtual Support Groups

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 →
Support for Parents/Guardians of Children w/Marfan, LDS, related conditions
Apr
16
7:00 PM19:00
Connection, Virtual Support Groups

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)
Apr
16
7:30 PM19:30
Connection, Virtual Support Groups, Espanol

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 →
Camp Victory for Kids: Georgia 2025
Jul
13
to Jul 18
Connection, Marfan Camps

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

View Event →
Camp Victory for Kids: California 2025
Jul
27
to Aug 1
Connection, Marfan Camps

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:

View Event →
Camp Victory for Families: Georgia 2025
Sep
19
to Sep 21
Connection, Marfan Camps

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

View Event →
Camp Victory for Families: California 2025
Oct
24
to Oct 26
Marfan Camps, Connection

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:

View Event →
Conexiones: Estamos juntos (impartido en español)
Mar
19
7:30 PM19:30
Connection, Virtual Support Groups, Espanol

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
Mar
19
7:00 PM19:00
Connection, Virtual Support Groups

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
Mar
11
6:00 PM18:00
Connection, Virtual Support Groups

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 →
Heartworks Chicago
Feb
21
6:00 PM18:00
Connection, Fundraising

Heartworks Chicago

Join us for a special evening at the Chicago HeartWorks Gala on Friday, February 21, as we come together to support the life-saving mission of The Marfan Foundation and build a brighter future for our loved ones affected by Marfan syndrome, Loeys-Dietz syndrome, VEDS, and related genetic aortic and vascular conditions.

View Event →
Conexiones: Estamos juntos (impartido en español)
Feb
19
7:30 PM19:30
Connection, Virtual Support Groups, Espanol

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
Feb
19
7:00 PM19:00
Connection, Virtual Support Groups

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
Feb
11
6:00 PM18:00
Connection, Virtual Support Groups

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 →