LDS International Connect Support Group
Dec
23
2:00 PM14:00

LDS International Connect Support Group

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.

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Marfan and Related Conditions Connect
Jan
2
5:00 PM17:00

Marfan and Related Conditions Connect

This group is for adults (under 50) with Marfan syndrome or a related condition. Participants have the opportunity to connect with others with a similar diagnosis for support and sharing of resources and information. If you are over 50, please register for the 50+ group.

The group meets on the first Thursday of every month from 5-6pm ET.

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Coping with Grief and Loss
Jan
14
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
Jan
15
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)
Jan
15
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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LDS International Connect Support Group
Jan
27
2:00 PM14:00

LDS International Connect Support Group

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.

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Marfan and Related Conditions Connect
Feb
6
5:00 PM17:00

Marfan and Related Conditions Connect

This group is for adults (under 50) with Marfan syndrome or a related condition. Participants have the opportunity to connect with others with a similar diagnosis for support and sharing of resources and information. If you are over 50, please register for the 50+ group.

The group meets on the first Thursday of every month from 5-6pm ET.

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Marfan Basics: Taking Care of Your Aorta
Feb
11
10:00 AM10:00

Marfan Basics: Taking Care of Your Aorta

The Marfan Foundation, Cleveland Clinic, and IndoUSRare are offering this unique learning opportunity for individuals and families living with Marfan syndrome. The speakers will provide an overview of the heart issues related to Marfan syndrome, as well as address medications, imaging, surgery, and physical activity guidelines.

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Coping with Grief and Loss
Feb
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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Support for Parents/Guardians of Children w/Marfan, LDS, related conditions
Feb
19
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
19
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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Heartworks Chicago
Feb
21
6:00 PM18:00

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.

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LDS International Connect Support Group
Feb
24
2:00 PM14:00

LDS International Connect Support Group

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.

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Camp Victory for Kids: Georgia 2025
Jul
13
to Jul 18

Camp Victory for Kids: Georgia 2025

Our unique Camp Victory for Kids program provides children and teens with genetic aortic and vascular conditions a 5-night traditional sleep-away camp experience in a safe and controlled environment. Campers participate in typical camp activities, such as swimming, boating, archery, arts & crafts, rock climbing, and team-building courses using adaptive equipment. In addition to these and other fun recreational activities, campers enjoy a variety of social events, eat meals together, and stay in accessible bunks in an area of the camp exclusively ours.

REGISTRATION COMING SOON!

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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

Our unique Camp Victory for Kids program provides children and teens with genetic aortic and vascular conditions a 5-night traditional sleep-away camp experience in a safe and controlled environment. Campers participate in typical camp activities, such as swimming, boating, archery, arts & crafts, rock climbing, and team-building courses using adaptive equipment. In addition to these and other fun recreational activities, campers enjoy a variety of social events, eat meals together, and stay in accessible bunks in an area of the camp exclusively ours.

REGISTRATION COMING SOON!

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Camp Victory for Families: Georgia 2025
Sep
19
to Sep 21

Camp Victory for Families: Georgia 2025

Similar to the kids’ camp, Camp Victory for Families offers children and teens with genetic aortic and vascular conditions and their families a chance to enjoy some of the same traditional camp activities, both as a family and with their peers. Families attending the 2-night family camp stay together in accessible bunks and dine and socialize with other families in a distinct area of the camp, offering more opportunities to strengthen bonds and build a sense of community.

REGISTRATION COMING SOON!

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

Camp Victory for Families: California 2025

Similar to the kids’ camp, Camp Victory for Families offers children and teens with genetic aortic and vascular conditions and their families a chance to enjoy some of the same traditional camp activities, both as a family and with their peers. Families attending the 2-night family camp stay together in accessible bunks and dine and socialize with other families in a distinct area of the camp, offering more opportunities to strengthen bonds and build a sense of community.

REGISTRATION COMING SOON!

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Conexiones: Estamos juntos (impartido en español)
Dec
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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Support for Parents/Guardians of Children w/Marfan, LDS, related conditions
Dec
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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Using Mindfulness to Increase Joy and Decrease Stress
Dec
11
5:30 PM17:30

Using Mindfulness to Increase Joy and Decrease Stress

Living with a chronic illness presents unique challenges that can significantly impact both physical and emotional well-being. This webinar explores how mindfulness practices can serve as valuable tools for managing the daily stresses and uncertainties that come with chronic health conditions.

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Coping with Grief and Loss
Dec
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 →
Marfan and Related Conditions Connect
Dec
5
5:00 PM17:00

Marfan and Related Conditions Connect

This group is for adults (under 50) with Marfan syndrome or a related condition. Participants have the opportunity to connect with others with a similar diagnosis for support and sharing of resources and information. If you are over 50, please register for the 50+ group.

The group meets on the first Thursday of every month from 5-6pm ET.

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(Rescheduled) Conexiones: Estamos juntos (impartido en español)
Nov
27
7:30 PM19:30

(Rescheduled) 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 →
LDS International Connect Support Group
Nov
25
2:00 PM14:00

LDS International Connect Support Group

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.

View Event →
Heartworks Houston
Nov
22
6:30 PM18:30

Heartworks Houston

You are invited to join us for a special evening at the 4th Annual Houston HeartWorks Gala on Friday, November 22, 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 →
Support for Parents/Guardians of Children w/Marfan, LDS, related conditions
Nov
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
Nov
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.

View Event →
Camp Victory for Families – California
Nov
8
to Nov 10

Camp Victory for Families – California

Like the kids’ camp, Camp Victory for Families offers children and teens with genetic aortic and vascular conditions and their families a chance to enjoy some of the same traditional camp activities, both as a family and with their peers. Families attending the 2-night family camp stay together in accessible bunks and dine and socialize with other families in a distinct area of the camp, offering more opportunities to strengthen bonds and build a sense of community.

View Event →
Marfan and Related Conditions Connect
Nov
7
5:00 PM17:00

Marfan and Related Conditions Connect

This group is for adults (under 50) with Marfan syndrome or a related condition. Participants have the opportunity to connect with others with a similar diagnosis for support and sharing of resources and information. If you are over 50, please register for the 50+ group.

The group meets on the first Thursday of every month from 5-6pm ET.

View Event →