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Pain Management
Are you or a loved one recently diagnosed with Marfan 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...
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VEDS Parents
If you are a parent of a child with VEDS, we invite you to join other parents to discuss the challenges of raising a child with this condition. This group will be hosted by Jan Lynch, RN, director of...
View ArticleVEDS Partners and Spouses
This group is for partners, spouses, and significant others of individuals diagnosed with VEDS to talk about their experience with others with similar experiences. The post VEDS Partners and Spouses...
View ArticleLDS Connect International
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...
View ArticleWalk For Victory – Atlanta
Join the Walk for Victory movement! Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. Together, we raise...
View ArticleWalk For Victory – Raleigh
Join the Walk for Victory movement! Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. Together, we raise...
View ArticleMarfan Connect (50+) Support
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 group meets on...
View ArticleNewly Diagnosed & Those Seeking Diagnosis
Are you or a loved one recently diagnosed with Marfan 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...
View ArticleConexiones: 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...
View ArticleSupport 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...
View ArticleHeartworks St. Louis
You are invited to 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...
View ArticleLDS Women’s Health Beyond Family Planning
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,...
View ArticleSupport for Young Adults with Marfan, VEDS, LDS and related conditions
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?...
View ArticleMarfan Connect
This group is for adults, 18-50, 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...
View ArticleWalk For Victory – Northern California
Join the Walk for Victory movement! Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. Together, we raise...
View ArticleWalk For Victory – DC
Join the Walk for Victory movement! Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. Together, we raise...
View ArticleTeen Game Night
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 Kahoot!, Among Us, and the Jackbox game series. Please note: to do so, you...
View ArticleVEDS Connect
1st Tuesday of each month at 8 pm Eastern Time If you have been diagnosed with VEDS, this group is specifically for you! This is an opportunity to meet others with VEDS and talk about the challenges...
View ArticleVEDS Parent Support Group for Adult Children
If you are a parent of an adult (18 years and older) with VEDS, we invite you to join other parents to discuss your experiences. This group will be hosted by Jan Lynch, RN, director of The Marfan...
View ArticleLDS Connect
If you have been diagnosed with LDS, this group is specifically for you! This is an opportunity to meet others with LDS and talk about the challenges we all face day-to-day. If you have not yet been...
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