To see a full list of our Support Group offerings, please click here.
*Please be sure to check our online calendar for any scheduling changes.*
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 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 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 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.
Health Fair testing will take place on July 10, and evaluations will occur on July 11.
The Conference kicks off the evening of July 11 and ends about 1:00 p.m. on Sunday.
Conference Location:
Hyatt Regency Atlanta
265 Peachtree Road NE
Atlanta, GA 30303
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
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.
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.
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.
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 support group is for people with Loeys-Dietz syndrome or a related conditions who are interested in exploring various ways to deal with pain.
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:
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.
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.
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 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.
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.
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.
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.
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 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 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
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:
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.
Join us for a special one-hour live webinar with Benjamin P. Feld, a disability lawyer and managing partner at Ghitterman, Ghitterman & Feld.
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.
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 as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
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.
Join us for an informative webinar on cerebrospinal fluid (CSF) leaks, a condition that can significantly impact individuals with Marfan syndrome and other hereditary connective tissue disorders.
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 as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
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.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
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.
Dream big with us as we celebrate the 25th Anniversary Heartworks Gala, benefiting The Marfan Foundation. For 25 years, this unforgettable evening has united a community of visionaries, advocates, and champions who share a common goal: transforming lives and creating a future filled with hope for those affected by Marfan syndrome and related genetic aortic and vascular conditions.
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.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
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.
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.
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.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
