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.
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 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.
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 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.
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.
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 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.
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.
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.
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.
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.
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.
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.
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.
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.
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 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.
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.
You are invited to join us for a special evening at UnCorked, a wine-tasting event on Thursday, February 29th at 6 PM, as we come together to support the life-saving mission of The Marfan Foundation and build a brighter future for those affected by Marfan syndrome, Loeys-Dietz syndrome, VEDS, and related genetic aortic and vascular conditions.
Hosted by Board Member Jim Prutow, guests will enjoy a wine tasting led by Master Sommelier Gambrelle Snyder, light bites, great company, and more! Your involvement is critical to the success of our mission, and we look forward to seeing you there. Cheers!
Join us for a special evening at the Chicago HeartWorks Gala on Friday, February 23, 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.
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.
