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20 Years of Awareness
 

 Webinars

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Upcoming Webinars

Register to participate in an upcoming webinar.

Events
QUINTA CUMBRE ANUAL EN ESPAÑOL
Jan 24
QUINTA CUMBRE ANUAL EN ESPAÑOL

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.

Choosing the Right Genetic Testing for Marfan, LDS, VEDS, and Stickler

Direct-to-consumer genetic testing can offer interesting insights into ancestry and common traits, but may fall short when it comes to identifying hereditary conditions like Marfan, VEDS, LDS, and Stickler.

During this webinar, Maya Brown-Zimmerman, MPH, MS, CGC, a cardio genetic counselor at Norton Children’s Hospital, will break down the key limitations of consumer genetic tests, including the possibility of inaccurate results and a lack of medical interpretation. Attendees will learn when clinical genetic testing is necessary, what comprehensive testing looks like, and how working with geneticists and genetic counselors can lead to an accurate interpretation of test results and appropriate follow-up care.

Lifecycle of the Aorta (LIVE)
Feb 23
Lifecycle of the Aorta (LIVE)

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.

Lifecycle of the Aorta: Replay with Live Q & A
Feb 25
Lifecycle of the Aorta: Replay with Live Q & A

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.

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Webinar Replays

 

The Loeys Dietz Syndrome Foundation has a designated playlist on The Marfan Foundation’s YouTube channel. Here, you will find all recorded webinars and presentations, as well as stories from members of our community.

View YouTube Playlist

Explore even more resources on our website.