You are not alone in your journey with Loeys-Dietz Syndrome

The Loeys-Dietz Syndrome Foundation is a division of The Marfan Foundation. Through this relationship, donations to the Loeys-Dietz Syndrome Foundation are tax-deductible and directly support our shared mission.
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.
Loeys-Dietz syndrome (LDS) is a genetic disorder that affects the connective tissue in the body. The disorder was first observed and described by Dr. Bart Loeys and Dr. Hal Dietz at the Johns Hopkins University School of Medicine in 2005. Since then, other groups around the world have described additional genetic causes of Loeys-Dietz syndrome.
By gathering family and friends who want to help make a difference, participating in fundraising events increases support for the Loeys-Dietz Syndrome Foundation, as well as builds awareness about LDS. From bowling to 5K runs to happy hours to jewelry – we have several fundraising opportunities available.
The Tribute Program of the Loeys-Dietz Syndrome Foundation provides a meaningful way to recognize and commemorate the important people and occasions in your life. You can honor a family member or friend, celebrate a special occasion, or remember a loved one. You can create a tribute page, make a donation to support an existing tribute page, or give directly to the LDSF.
The Loeys-Dietz Syndrome Foundation is always looking for more people to get involved and join our community. If you have a request or would like to help the LDSF further our mission, please email info@loeysdietz.org.
We love getting to connect with Loeys-Dietz families and hearing your stories of inspiration and hope. If you would like to share your story, please visit our Stories page and complete the online form. We will then be in touch with you to record your story on video or via transcription.
As the LDSF moves forward to meet the educational and resource needs of its community, we are asking for you to consider financially supporting our mission.
As our amazing Loeys-Dietz Syndrome community grows, it is more important than ever that we have fun together! View our calendar for the latest digital and local events.