Filtering by: Education
People's Perspectives: Living with Loeys-Dietz Syndrome
Mar
19
7:00 PM19:00
Education, Webinar

People's Perspectives: Living with Loeys-Dietz Syndrome

For the first time, the Loeys-Dietz Syndrome Foundation Canada and the Loeys-Dietz Syndrome Foundation – a division of the Marfan Foundation – are joining forces to bring you real talk about LDS from those with lived experience. Join four community members – two from the United States and two from Canada – for this dynamic moderated discussion. Registration is free but required. Your advance questions to brandcomms@marfan.org are most welcome!

Please note: registrant information will be shared with both the Canadian and U.S. Loeys-Dietz Foundations for practical considerations around this joint event. Review our privacy policies: LDSF Canada and LDSF (U.S.)

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Variants of Uncertain Significance: What a VUS Result Means for You and Your Family
Mar
21
3:00 PM15:00
Education, Webinar

Variants of Uncertain Significance: What a VUS Result Means for You and Your Family

A variant of uncertain significance (VUS) is a common genetic test result, but one that often raises more questions than answers.

In this webinar, Bart Loeys, MD, PhD, from the Center of Medical Genetics Antwerp and a member of the Marfan Foundation’s professional advisory board, will explain what a VUS is, why these results occur, and how they are interpreted for conditions such as Marfan syndrome, Loeys-Dietz syndrome, VEDS, and Stickler syndrome.

Attendees will learn how VUS results are monitored over time, when (and if) they may be reclassified, and how healthcare professionals use this information to guide care and next steps.

Registration is free but required.

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Kentucky Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS
Mar
28
8:00 AM08:00
Education, Connection, Symposium

Kentucky Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS

  • S. Randolph Scheen Family Conference Center Norton Children’s Hospital (map)
  • Google Calendar ICS

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.

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Simposio virtuale sulle sindromi di Marfan, Loeys-Dietz, VEDS e Stickler
Apr
18
2:00 PM14:00
Education, Connection

Simposio virtuale sulle sindromi di Marfan, Loeys-Dietz, VEDS e Stickler

Invitiamo i pazienti e le loro famiglie a partecipare a un simposio virtuale con presentazioni, in italiano, dedicate alle sindromi di Marfan, Loeys-Dietz, Ehlers-Danlos vascolare (VEDS) e Stickler. Gli interventi si concentreranno sull'esercizio fisico e l'attività motoria, sull'immagine corporea e l'autostima, sulla pianificazione familiare e su altri temi di carattere medico. Inoltre, è previsto un panel in cui alcune persone condivideranno le proprie esperienze di vita personali con queste condizioni, raccontando ciò che le ha aiutate nel loro percorso.

La Marfan Foundation offre questa opportunità formativa a titolo gratuito. Per ottenere il collegamento Zoom, è richiesta la registrazione.

Registrati
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Lifecycle of the Aorta: Replay with Live Q & A
Feb
25
1:30 PM13:30
Education, Webinar

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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Lifecycle of the Aorta (LIVE)
Feb
23
7:00 PM19:00
Webinar, Education

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.

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Jan
26
7:00 PM19:00
Education, Webinar

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.

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QUINTA CUMBRE ANUAL EN ESPAÑOL
Jan
24
10:00 AM10:00
Espanol, Education, International, Webinar

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.

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Global Conference
Jul
11
to Jul 13
Conference, Connection, Education, International, Symposium

Global Conference

  • Hyatt Regency Atlanta (map)
  • Google Calendar ICS

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

Learn more
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Michigan Regional Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS
Apr
5
8:00 AM08:00
Connection, Education, Symposium

Michigan Regional Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS

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.

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