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

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

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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Insights from the LDS Natural History Study at NIH: Audiology and Otology
Apr
8
1:00 PM13:00

Insights from the LDS Natural History Study at NIH: Audiology and Otology

Insights from the LDS Natural History Study at NIH: Audiology and Otology offers an in-depth look at hearing and ear-related findings emerging from the Loeys-Dietz Syndrome (LDS) Natural History Study conducted at the National Institutes of Health. This webinar will be led by NIH experts Dr. Jeffrey Kim, D.D.S and Julie Christensen, M.S., who will share current insights into audiology and otology as they relate to individuals living with LDS.

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Aortic Emergencies: Webinar for Aussies and Kiwis
Mar
17
1:30 PM13:30

Aortic Emergencies: Webinar for Aussies and Kiwis

Please join us for a webinar on aortic emergencies that is geared toward people living in Australia and New Zealand. Dr. Michelle Lim, a member of the Foundation's Genetic Aortic Network Education Working Group, leads this effort for Aussies and Kiwis. The featured speakers are Dr. Benjamin Robinson, Consultant Cardiothoracic Surgeon at Royal Prince Alfred Hospital, and Dr. Geoffrey Lester, an aortic dissection survivor who is a vascular and internal medicine physician, researcher, health economist, and the head of Think Aorta Australia and New Zealand. Learn from the experts and have your questions answered.

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Rooted & Resilient: Mindfulness Tools for LDS Advocates
Mar
5
7:00 PM19:00

Rooted & Resilient: Mindfulness Tools for LDS Advocates

Rooted and Resilient: Mindfulness Tools for LDS Advocates is an empowering webinar designed to support individuals and advocates within the Loeys-Dietz Syndrome (LDS) community. Led by music therapist and mindfulness practitioner Katelyn “Katey” Kratz, LPMT, MT-BC—who is herself living with Loeys-Dietz Syndrome—this session explores practical, accessible ways to cultivate resilience in the face of chronic illness and advocacy work.

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How to Read a Genetic Testing Report
Feb
25
7:00 PM19:00

How to Read a Genetic Testing Report

How to Read a Genetic Testing Report: A Practical Guide for Individuals and Families

Join the Marfan Foundation and its divisions on February 25 at 7:00 p.m. ET for an overview of how to read and understand a genetic testing report for individuals with Marfan, LDS, VEDS, Stickler, and other genetic aortic and vascular conditions.

Peter Byers, MD, Founder and Director of the Collagen Diagnostic Laboratory at the University of Washington and a member of the Marfan Foundation’s professional advisory board, will explain the key components of a typical report, define common vocabulary, and demystify how genetic variants and mutations are described.

Attendees will learn about the different classifications, what information to focus on, and how to interpret results in a meaningful way.

This webinar is free to attend but registration is required.

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

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

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

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

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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Empowered Relief® with Dr. Beth Darnall
Nov
12
1:00 PM13:00

Empowered Relief® with Dr. Beth Darnall

Empowered Relief® is a one-time class that equips individuals with essential pain relief skills in just 2.5 hours. Participants apply the skills and tools to create their personalized plan. Applied daily at home, the personalized plan helps participants master the skills. Multiple published studies show Empowered Relief® helps reduce pain and pain impacts on activity, mood, anxiety and sleep up to 6 months after taking the class.

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Marfan Basics: Taking Care of Your Aorta
Feb
11
10:00 AM10:00

Marfan Basics: Taking Care of Your Aorta

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.

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Using Mindfulness to Increase Joy and Decrease Stress
Dec
11
5:30 PM17:30

Using Mindfulness to Increase Joy and Decrease Stress

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.

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Nov
4
7:00 PM19:00

Navigating the Diagnosis and Management of Pediatric Aortopathy

Join us on November 4 at 7:00 p.m. Eastern as Dr. Shaine A. Morris of Texas Children’s Hospital and Dr. Ronald Lacro of Boston Children’s Hospital discuss key takeaways from the American Heart Association’s (AHA’s) scientific statement on the cardiovascular management of aortopathy in children.

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The Marfan Foundation’s Global Virtual Conference
Jun
17
to Jun 22

The Marfan Foundation’s Global Virtual Conference

The Marfan Foundation’s Global Virtual Conference connects people living with genetic aortic and vascular conditions, their loved ones, healthcare providers, and researchers from around the world for a unique event that holistically explores the many facets of life with Marfan, Loeys-Dietz, VEDS, and related conditions.

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Mindfulness Series: Breathing Into Peaceful Awareness
May
8
8:00 PM20:00

Mindfulness Series: Breathing Into Peaceful Awareness

Join The Marfan Foundation for a free one-hour session of "Breathing Into Peaceful Awareness" as part of our Mindfulness Series. In this session, Sarah Schain, founder of SomoBreathe, LLC, will introduce you to the practice of meditation and breathing, and grounding into your breath and body. Learn how these strategies can contribute to your overall well-being.

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LDS Women’s Health Beyond Family Planning
Apr
25
7:30 PM19:30

LDS 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, perimenopause and menopause, hormonal support, and uterine prolapse. There will be time to get your questions answered.

While the content will be tailored to individuals living with Loeys-Dietz syndrome, others with similar genetic aortic and vascular conditions may find it helpful.

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May
2
5:00 PM17:00

Webinar: Eyes Research

Dr. Doyle will discuss his study that aims to better understand nearsightedness in Marfan in order to identify new treatment strategies. This research was funded in part by a 2021 grant from The Marfan Foundation. Dr. Vanderveen will discuss the multi-center studies for the ARTISAN Aphakia Lens which provides a treatment option for improving the vision of children and adults with Marfan syndrome.

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Research Webinar: Exploration of a Novel Biomarker and the Connective Tissues Community
Jan
26
12:00 PM12:00

Research Webinar: Exploration of a Novel Biomarker and the Connective Tissues Community

Researchers, Dr. Bart Loeys and Aline Verstraeten will discuss their exciting new research on a novel biomarker for thoracic aortic aneurysm and dissection. They will share why biomarker research is important and its potential impact on the Loeys-Dietz syndrome and connective tissue communities. 

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