Connective Issues Winter 2025

EDUCATIONAL EVENTS

4 th Spanish-Language Summit: What You Need to Know About Marfan, Loeys-Dietz, and VEDS SATURDAY, JANUARY 25 10:00 am-12:30 pm ET The Marfan Foundation will host its 4 th Annual Virtual Spanish-Language Summit for a ff ected people and their families free of charge. During this educational event, participants will learn the latest on Marfan, Loeys Dietz, and VEDS from medical experts, get their questions answered, and connect with others. The summit will be fully virtual and streamed online, accessible from anywhere in the world. Learn more and register today at Marfan.org/ CumbreEspanol .

Marfan Basics Webinar: Taking Care of Your Aorta TUESDAY, FEBRUARY 11 10:00-11:30 am EDT / 8:30-10:00 pm IST

As part of Marfan Awareness Month in February, the Marfan Foundation, Cleveland Clinic, and IndoUSRare are o ff ering this free, 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. Register today at Marfan.org/marfanaorta . Webinar Presenters

Webinar: Dural Ectasia in Marfan and Loeys-Dietz Syndromes MONDAY, FEBRUARY 3 7:00-8:00 am ET This free webinar will discuss dural ectasia in both Marfan and Loeys-Di etz syndromes. Dr. Wouter Schievink, Director of the Microvascular Neuro surgery Program at Cedars-Sinai will explain dural ectasia, its symptoms, and treatment options. Sign up at Marfan.org/duralectasiamarfanlds .

Vidyasagar Kalahasti, MD Cleveland Clinic

Siddharth Prakash, MD, PhD University of Texas Health Science Center

Melind Desai, MD Cleveland Clinic

Ibraham Sultan, MD University of Pittsburgh Medical Center

Patient Perspective: Adam Haniff, MD

Spring Symposiums: Save the Dates As part of the Foundation’s educational outreach, we host symposiums across the country. Collaborating with area medical institutions and experts, these in-person events pro vide opportunities to learn about genetic aortic and vascular conditions like Marfan, Loeys-Dietz, and VEDS, and connect with others from the community. Save the date and plan now for our spring symposiums in April. Register at Marfan.org/ educational-opportunities . APRIL5 : Northern California Regional Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS, Stanford Health Care, Stanford, CA APRIL5 : Michigan Regional Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS, Michigan Medical Center, Ann Arbor, MI

NEW VIRTUAL SUPPORT GROUP Early-Onset (Neonatal) Marfan Syndrome Are you a parent or guardian of a child with early onset (previously called neonatal or infantile) Marfan syndrome? Is your child 18 years old and younger? If so, we invite you to join other parents to discuss the challenges of raising a child with these conditions. This group meets on the second Tuesday of every month at 8 pm EST. View and sign up for all support groups at Marfan.org/virtual-support-groups .

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Winter 2025