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.

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.

Dr. Hal Dietz will discuss 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.

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. 

Ya está abierta la inscripción para la Segunda Cumbre Anual de la Fundación Marfan: información educativa sobre Marfan, Loeys-Dietz, VEDS y condiciones relacionadas para pacientes y familias. Esta conferencia será virtual, completamente en español y tendrá lugar el 21 de enero de 2022, de 08:30 a 13:00 hora del este. Se realizará de manera virtual para que pueda verse desde cualquier parte del mundo con un teléfono inteligente, tableta, computadora de escritorio o portátil y conexión a Internet. ¡Registrarse es gratis!

Join us for a free webinar to learn about the new ACC/AHA guidelines for the management and treatment of aortic disease and what the new guidelines mean for people with genetic aortic and vascular condition.

In addition to cardiac, orthopedic, and arterial considerations, individuals affected by Loeys-Dietz syndrome often experience gastroenterology and allergy effects. This webinar will be a Q&A session with LDS experts Dr. Anthony Guerrerio and Dr. Pamela Frischmeyer-Guerrerio answering common gastro and allergy-related questions.

Join us on Wednesday, November 9 at 7pm Eastern to hear about the nearly a dozen new studies on physical activity and genetic aortic conditions that were presented at the Science in Paris meetings in August 2022. In this webinar, Drs. Braverman and Prakash will share the highlights, as well as other new studies about exercise for people with Marfan, LDS, and VEDS.

Please join us for a webinar on family planning and pregnancy, brought to you by the GenTAC Alliance Patient, Families, and Clinicians Education Working Group. Medical experts from the US and Europe will present the options for family planning and pregnancy when you have a connective tissue condition and the different recommendations in the US and EU.