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.*
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.
nvitamos a pacientes y sus familias a unirse a nosotros en un día educativo sobre el síndrome de Marfan, el síndrome de Loeys-Dietz y el síndrome vascular de Ehlers-Danlos (VEDS). La cumbre de este año contará con presentaciones sobre los últimos avances en investigación y genética/planificación familiar. Además, expertos locales hablarán sobre cómo obtener atención médica en España, México, Colombia, Chile y Argentina. Además habrá espacio para responder sus preguntas. La Fundación Marfan ofrece esta cumbre de manera completamente gratuita. Será totalmente virtual y transmitida en línea, para que pueda acceder desde cualquier lugar del mundo. El enlace de Zoom se enviará después de registrarse.
Please join us for a webinar on the Lifecycle of the Aorta, a presentation from the Genetic Aortic Network, a division of The Marfan Foundation. Do you ever wonder what's normal for the aorta and what's due to a genetic aortic condition? This webinar will focus on the aorta from childhood, through adulthood, and into the senior years. The presenters are Dr. Glen Iannucci, Children's Hospital of Atlanta, Dr. Michelle Lim, Central Sydney Cardiology (Australia), and Dr. Juan Bowen, Mayo Clinic/Rochester, MN. In addition to the presentations, there will be plenty of time to ask questions.
Do you ever wonder what's normal for the aorta and what's due to a genetic aortic condition? If you were unable to join us for the live webinar on Lifecycle of the Aorta, here is another chance to view the webinar and ask questions as Dr. Elena Cervi, from the Great Ormond Street Hospital in London, will be joining us LIVE.
The Marfan Foundation and Norton Children’s Heart Institute present an educational opportunity for individuals and families living with Marfan, Loeys-Dietz, VEDS, and related conditions. This informative and engaging event will provide the latest updates on treatment and quality of life issues, and includes opportunities to network with the speakers and connect with other people in the area who are also living with these conditions.
Join the Genetic Aortic Network on December 12 at 11:00 a.m. ET for a webinar on highlights from “Recommendations for Design, Execution, and Reporting of Studies on Experimental Thoracic Aortopathy in Preclinical Models” (Arteriosclerosis, Thrombosis, and Vascular Biology, 2025).
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.
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 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.
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 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.
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.
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 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.
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
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.
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.
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.
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.
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 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.
The Marfan Foundation and the University of Michigan’s MI-AORTA team present a full-day educational opportunity for individuals and families living with Marfan, Loeys-Dietz, VEDS, and related conditions. The event includes a Creating Connections luncheon, which enables attendees to network with the speakers and connect with other people in the area who also have their condition.
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 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.
We’re celebrating our 6th year of raising awareness for Loeys-Dietz syndrome (LDS) by declaring March as Loeys-Dietz awareness month!
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 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.
The Marfan Foundation, Cleveland Clinic, and IndoUSRare are offering this unique learning opportunity for individuals and families living with Marfan syndrome. The speakers will provide an overview of the heart issues related to Marfan syndrome, as well as address medications, imaging, surgery, and physical activity guidelines.
This webinar will discuss Dural Ectasia in both Marfan and Loeys Dietz Syndrome. Dr. Wouter Schievink, Director of the Microvascular Neurosurgery Program at Cedars-Sinai will explain what Dural Ectasia is, the symptoms, as well as treatment options.
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 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.
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 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.
Living with a chronic illness presents unique challenges that can significantly impact both physical and emotional well-being. This webinar explores how mindfulness practices can serve as valuable tools for managing the daily stresses and uncertainties that come with chronic health conditions.
