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.

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.

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.

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.

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.

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.

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.

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).

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.

Join us for a special one-hour live webinar with Benjamin P. Feld, a disability lawyer and managing partner at Ghitterman, Ghitterman & Feld.

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.

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.

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.

Join us on Wednesday, September 25, from 8 - 9 pm EST for an art class designed to eliminate stress and pursue happiness in the present moment.

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.

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.

Estate planning is not just for millionaires. You're never too young or old to start planning!

Aprenda de expertos médicos y obtenga respuestas a sus preguntas. 

Cirugía aórtica y afecciones del tejido conectivo: !lo que debería saber!

Join us for a FREE webinar on genetic testing! Learn when genetic testing is recommended, who should get it, what the benefits are, and what are the possible outcomes. There will also be time to get your questions answered.

Dr. Enid Neptune will discuss the latest studies related to lung issues in people with Marfan and related conditions.

Dr. Dietz discussed the latest research on the genetics of Marfan, LDS, and VEDS in a way that is understandable for individuals and families living with these conditions.