Marfan and Related Conditions Connect
Sep
4
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
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.

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Walk For Victory – Cleveland
Sep
13
12:00 PM12:00

Walk For Victory – Cleveland

  • Cleveland Clinic - Crile Mall (map)
  • Google Calendar ICS

Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. Together, we raise awareness and help families get the best medical care from leading experts. Together, we help fund events and programs that improve the lives of our community: support groups, symposiums, conferences, Camp Victory for kids, life-saving research, and more! 

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

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Conexiones: Estamos juntos (impartido en español)
Sep
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.

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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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LDS International Connect Support Group
Sep
22
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
Oct
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.

View Event →
Coping with Grief and Loss
Oct
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 (Copy)
Oct
15
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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Conexiones: Estamos juntos (impartido en español)
Oct
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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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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Cincinnati Regional Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS
Oct
25
8:00 AM08:00

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

The Marfan Foundation and Cincinnati Children’s Hospital Medical Center 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 also have their condition.

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LDS International Connect Support Group
Oct
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
Nov
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.

View Event →
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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Houston Heartworks Gala
Nov
14
6:30 PM18:30

Houston Heartworks Gala

You are invited to join us for a special evening at the 5th Annual Houston HeartWorks Gala on Friday, November 14 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.

Guests will enjoy cocktails, dinner, live entertainment, and great company! We will also recognize deserving individuals who have made significant contributions to our community.

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Heartworks Chicago
Feb
20
6:30 PM18:30

Heartworks Chicago

Join us for a special evening at the Chicago HeartWorks Gala on Friday, February 20, 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
Aug
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.

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The Northern Illinois Chapter Potluck Picnic
Aug
23
11:30 AM11:30

The Northern Illinois Chapter Potluck Picnic

Please join the Northern Illinois Chapter of the Marfan Foundation for a potluck picnic and fun outdoor activities for the whole family!

On GPS, enter 26401 Grande Park Blvd (IP Code 60585), the clubhouse/pool to the east of the park. Enter the large parking lot marked with the Community Park sign and go to the pavilion on the left.
The Chapter will supply fried chicken, hot dogs, and a variety of sodas! Please bring a side dish or dessert to share with everyone, and any other food or drink for yourself. The park has a covered pavilion, large playground, portable toilet, basketball courts, tennis courts, roller hockey court, sand volleyball, and large grassy areas for play!

Please bring lawn chairs for extra seating and any balls/equipment for play.
If you can join us, please RSVP by August 17 to 630-803-6246 or illinoisgroup@marfan.org with the number of guests and what type of side/dessert you plan to bring to share.
The event will be canceled in the case of inclement weather.

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Conexiones: Estamos juntos (impartido en español)
Aug
20
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
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
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.

View Event →
Cincinnati Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS
Aug
12
5:00 PM17:00

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

  • Cincinnati Children's Hospital Medical Center (map)
  • Google Calendar ICS

The Marfan Foundation and Cincinnati Children’s Hospital Medical Center 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 also have their condition.

View Event →
Marfan and Related Conditions Connect
Aug
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 →
LDS International Connect Support Group
Jul
28
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: 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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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.

View Event →
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 →
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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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.

View Event →