Have you been diagnosed with Marfan syndrome, VEDS, Loeys-Dietz syndrome or another related condition? Are you between the ages of 18 and 30? Would you like to connect with others in your age group? If so, this support group is for you.
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.
Join us on Saturday, May 4 for the 2024 Northern California Walk for Victory! Walk for Victory is The Marfan Foundation’s global walk program that brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers-Danlos (VEDS), and related conditions community together.
Join us on Saturday, May 4 for the 2024 Northern California Walk for Victory! Walk for Victory is The Marfan Foundation’s global walk program that brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers-Danlos (VEDS), and related conditions community together.
Join us for a virtual game night! Teens ages 13-18 are invited to register to join in the fun. We will be playing games using the Jackbox game series.
Have you been diagnosed with Loeys-Dietz syndrome? This group is a space to talk and connect with people in the community and share what you’re going through with others who understand. The group meets on the second Thursday of every month from 7-8 pm ET.
The Northwest Genetic Aortopathy & Arteriopathy Program Regional Symposium on Marfan Syndrome, Loeys-Dietz, and Vascular Ehlers-Danlos Syndrome is an educational opportunity for healthcare professionals or individuals and families living with Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions.
Join others in our connective tissue condition communities to share concerns and discuss issues related to everyday life. You will feel supported, heard, and enjoy the time spent with others.
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.
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.
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.
Are you or a loved one recently diagnosed with Loeys-Dietz syndrome or a related condition? Are you or a loved one seeking diagnosis? If you would like to connect with others who are just starting out on this medical journey, this group is for you.
Are you diagnosed with Marfan syndrome or a related condition? Are you 50 years old or older? Would you like to connect with others in your age group? If so, this group is for you.
Join us on Saturday, May 18 for the 2024 Pittsburgh Walk for Victory! Walk for Victory is The Marfan Foundation’s global walk program that brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers-Danlos (VEDS), and related conditions community together.
Join us on Sunday, May 19 for the 2024 Denver Walk for Victory! Walk for Victory is The Marfan Foundation’s global walk program that brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers-Danlos (VEDS), and related conditions community together.
Teens Together: A Night to Chat is a place for Teens ages 13-18. Join this virtual get-together to become a part of the conversation. Get to know other teens who with Marfan, LDS, VEDS, and related conditions to talk about life, laugh, and everything in between.
Your presence will ignite the sparkle at the iconic Rainbow Room on May 21 when you attend the Marfan Foundation’s signature event, the HeartWorks Gala in Manhattan. You’ll help save and improve the lives of people impacted by genetic aortic and vascular conditions while you enjoy a brilliant evening of cocktails, dinner, and entertainment amid the company of top supporters from across the nation.
Join us for the Kids Club, a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction and connection with others who have a similar diagnosis.
This support group is for people with Loeys-Dietz syndrome or a related conditions who are interested in exploring various ways to deal with pain.
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.
Join us on Saturday, June 1 for the 2024 NYC Walk for Victory! Walk for Victory is The Marfan Foundation’s global walk program that brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers-Danlos (VEDS), and related conditions community together.
Join us on Sunday, June 2 for the 2024 Boston Walk for Victory! Walk for Victory is The Marfan Foundation’s global walk program that brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers-Danlos (VEDS), and related conditions community together.
Join us for a virtual game night! Teens ages 13-18 are invited to register to join in the fun. We will be playing games using the Jackbox game series.
Have you been diagnosed with Marfan syndrome, VEDS, Loeys-Dietz syndrome or another related condition? Are you between the ages of 18 and 30? Would you like to connect with others in your age group? If so, this support group is for you.
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.
Join us on Saturday, June 8 for the 2024 Pacific Northwest Walk for Victory! Walk for Victory is The Marfan Foundation’s global walk program that brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers-Danlos (VEDS), and related conditions community together.
Join us on Saturday, June 8 for the 2024 Chicago Walk for Victory! Walk for Victory is The Marfan Foundation’s global walk program that brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers-Danlos (VEDS), and related conditions community together.
Join others in our connective tissue condition communities to share concerns and discuss issues related to everyday life. You will feel supported, heard, and enjoy the time spent with others.
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.
Have you been diagnosed with Loeys-Dietz syndrome? This group is a space to talk and connect with people in the community and share what you’re going through with others who understand. The group meets on the second Thursday of every month from 7-8 pm ET.
Join us on Saturday, June 15 for the 2024 Milwaukee Walk for Victory! Walk for Victory is The Marfan Foundation’s global walk program that brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers-Danlos (VEDS), and related conditions community together.
Join us on Saturday, June 15 for the 2024 Philadelphia Walk for Victory! Walk for Victory is The Marfan Foundation’s global walk program that brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers-Danlos (VEDS), and related conditions community together.
Teens Together: A Night to Chat is a place for Teens ages 13-18. Join this virtual get-together to become a part of the conversation. Get to know other teens who with Marfan, LDS, VEDS, and related conditions to talk about life, laugh, and everything in between.
Join us for the Kids Club, a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction and connection with others who have a similar diagnosis.
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.
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.
Are you or a loved one recently diagnosed with Loeys-Dietz syndrome or a related condition? Are you or a loved one seeking diagnosis? If you would like to connect with others who are just starting out on this medical journey, this group is for you.
Are you diagnosed with Marfan syndrome or a related condition? Are you 50 years old or older? Would you like to connect with others in your age group? If so, this group is for you.
Join us on Saturday, May 11 for the 2024 Global Walk for Victory! Walk for Victory is The Marfan Foundation’s global walk program that brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers-Danlos (VEDS), and related conditions community together.
Join us on Saturday, June 15 for the 2024 Iowa Walk for Victory! Walk for Victory is The Marfan Foundation’s global walk program that brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers-Danlos (VEDS), and related conditions community together.
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.
This support group is for people with Loeys-Dietz syndrome or a related conditions who are interested in exploring various ways to deal with pain.
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.
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.
Join us for a special evening as we celebrate the 15th Anniversary of the Heartworks Gala St. Louis on Saturday, April 27th, 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.
This webinar will be presented by a panel of medical experts and moderated by Melissa Russo, MD. We will discuss women's issues beyond family planning, including, but not limited to, endometriosis, perimenopause and menopause, hormonal support, and uterine prolapse. There will be time to get your questions answered.
While the content will be tailored to individuals living with Loeys-Dietz syndrome, others with similar genetic aortic and vascular conditions may find it helpful.
This support group is for people with Loeys-Dietz syndrome or a related conditions who are interested in exploring various ways to deal with pain.
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.
Join us on Sunday, April 21 for the 2024 Atlanta Walk for Victory! Walk for Victory is The Marfan Foundation’s global walk program that brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers-Danlos (VEDS), and related conditions community together.
Join us on Saturday, April 20 for the 2024 Raleigh Walk for Victory! Walk for Victory is The Marfan Foundation’s global walk program that brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers-Danlos (VEDS), and related conditions community together.
Are you diagnosed with Marfan syndrome or a related condition? Are you 50 years old or older? Would you like to connect with others in your age group? If so, this group is for you.
Are you or a loved one recently diagnosed with Loeys-Dietz syndrome or a related condition? Are you or a loved one seeking diagnosis? If you would like to connect with others who are just starting out on this medical journey, this group is for you.
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.
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.
Join us for the Kids Club, a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction and connection with others who have a similar diagnosis.
Teens Together: A Night to Chat is a place for Teens ages 13-18. Join this virtual get-together to become a part of the conversation. Get to know other teens who with Marfan, LDS, VEDS, and related conditions to talk about life, laugh, and everything in between.
More information coming soon.
Have you been diagnosed with Loeys-Dietz syndrome? This group is a space to talk and connect with people in the community and share what you’re going through with others who understand. The group meets on the second Thursday of every month from 7-8 pm ET.
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.
Be Heard, Take Action
The Marfan Foundation and its divisions are pleased to announce we are hosting Virtual Capitol Hill Days, to take place April 9-11, 2024.
Join others in our connective tissue condition communities to share concerns and discuss issues related to everyday life. You will feel supported, heard, and enjoy the time spent with others.
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.
Have you been diagnosed with Marfan syndrome, VEDS, Loeys-Dietz syndrome or another related condition? Are you between the ages of 18 and 30? Would you like to connect with others in your age group? If so, this support group is for you.
Be Heard, Take Action
The Marfan Foundation and its divisions are pleased to announce we are hosting Virtual Capitol Hill Days, to take place April 9-11, 2024.
Join us for a virtual game night! Teens ages 13-18 are invited to register to join in the fun. We will be playing games using the Jackbox game series.
This support group is for people with Loeys-Dietz syndrome or a related conditions who are interested in exploring various ways to deal with pain.
Be Heard, Take Action
The Marfan Foundation and its divisions are pleased to announce we are hosting Virtual Capitol Hill Days, to take place April 9-11, 2024.
Are you or a loved one recently diagnosed with Loeys-Dietz syndrome or a related condition? Are you or a loved one seeking diagnosis? If you would like to connect with others who are just starting out on this medical journey, this group is for you.
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.
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.
Join us for the Kids Club, a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction and connection with others who have a similar diagnosis.
Teens Together: A Night to Chat is a place for Teens ages 13-18. Join this virtual get-together to become a part of the conversation. Get to know other teens who with Marfan, LDS, VEDS, and related conditions to talk about life, laugh, and everything in between.
Are you diagnosed with Marfan syndrome or a related condition? Are you 50 years old or older? Would you like to connect with others in your age group? If so, this group is for you.
Have you been diagnosed with Loeys-Dietz syndrome? This group is a space to talk and connect with people in the community and share what you’re going through with others who understand. The group meets on the second Thursday of every month from 7-8 pm ET.
