Co-presented by our friends from Annabelle’s Challenge, Marfan Trust, The Aortic Dissection Charitable Trust, and Terumo Aortic, our inaugural London symposium brought together about 200 people interested in hearing from the experts and improving quality of life.
“As a patient, I think this was the most empowering meeting I have been to in my 59 years living with Marfan syndrome. There was nothing like this when I began my journey. It would have helped so much. But I’m still standing! Here’s to using our collective talents to make life better for the current and future generations of patients, who have so much amazing new medicine/surgery to benefit from,” said attendee and presenter Gareth Owen Chair of Trustees at the national patient charity Aortic Dissection Awareness UK & Ireland and leader of the global THINK AORTA campaign.
Topics covered by experts from England, the U.S. and around the globe during the event included: genetics and genetic testing, pediatric aortopathies, day-to-day management through medications and lifestyle, staying active and healthy, options in aortic surgery, vascular surgery, how to be a rockstar during a crisis, aging well, cardiovascular emergency preparedness, and self-advocacy for people living with VEDS, Loeys-Dietz syndrome, Marfan syndrome, and those transitioning from pediatric to adult patient status.
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.