Every year, we hold an annual conference which provides people living with Marfan syndrome and related disorders, and their families, an opportunity to learn about these conditions from the country’s medical experts, hear about the latest research, and connect with other people who are on the same medical journey.
We offer specialized programs and workshops for people of every age, including children, teens, young adults, and older people. In addition, we offer conference attendees free medical assessments, which we make possible in conjunction with the medical institution that co-hosts the meet with us and our dedicated medical advisors, who are the leading doctors on Marfan syndrome and related disorders from across the U.S. This is a unique offering that is truly a benefit for those who do not have access to expert medical care near their home or lack healthcare coverage. And, we offer scholarships for first-time conference attendees.
The Marfan Foundation’s 34th Annual Conference is scheduled for July 12-15, 2018, in Santa Clara, CA. It will be co-hosted by Stanford University Medical Center. Details will be posted in early 2018.
Our 33rd Annual Conference, held in Atlanta in association with Children’s Healthcare of Atlanta, Sibley Heart Center Cardiology, and Emory Heart & Vascular Institute, featured medical presentations given by an esteemed group of healthcare professionals. You can view them here:
Pediatric Cardiac Surgeryby E. Dean McKenzie, MD, Sibley Heart Center
Managing Painby Traci Speed, MD, PhD, Johns Hopkins UniversityDownload Powerpoint Presentation
Compassion Training: Self-Care for Patients and Caregiversby Samuel Fernandez-Carriba, PhD, Emory University School of MedicineDownload Powerpoint Presentation
Physical Activity Guidelinesby Alan Braverman, MD, Washington UniversityDownload Powerpoint Presentation
Physical Therapy for Chronic Disordersby Michael Healy, BS, MBA, DOMTP, DTP, Healy Physical Therapy and Sports MedicineDownload Powerpoint Presentation
Research Updateby Hal Dietz, MD, Johns Hopkins School of MedicineDownload Powerpoint Presentation