27th Annual Conference of the National Marfan Foundation

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DESCRIPTION (provided by applicant): The 27th Annual Conference of the National Marfan Foundation is scheduled for July 13-17, 2011, in Portland, OR. Oregon Health & Science University and the Shriners Hospital for Children will serve as co- hosts for the Conference. The Conference will be composed of a pre-Conference scientific meeting, two Clinic Days, Medical Education Day, and a day devoted to psychosocial workshops and support groups. During the meeting, individuals and their families, as well as clinicians and researchers, will be provided with the most up- to-date information on research, diagnosis, and treatment of Marfan syndrome and related disorders. At the Clinic, experts on Marfan syndrome and related disorders will assess individuals and their families, providing a practicum for local clinicians and a forum for discussion of the evolving concepts of Marfan syndrome and related disorders. The Clinic Day practicum is an invaluable learning experience for all. The Conference uniquely affords the opportunity to learn about Marfan syndrome and related disorders from a variety of perspectives. It is within this integrative context that progress is evaluated and discussed by clinicians and researchers. This unique approach of combining medical education and research within a venue which also focuses on the human needs of affected individuals and their families is responsible for the rapid progress in this area. The specific aims of the 27th Annual Conference of the National Marfan Foundation are (1) to evaluate progress made in the understanding and treatment of Marfan syndrome and related disorders; (2) to integrate and synergize research efforts in this area with the needs of affected individuals and their families; (3) to educate clinical practitioners as well as affected individuals and their families. This R13 grant application will provide the funds necessary to bring the Professional Advisory Board, whose members constitute the nation's experts on Marfan syndrome and related disorders, as well as selected guest clinicians and researchers to Portland to participate in the pre-Conference scientific meeting, in the Clinic Day practicum, and in the Medical Education Day plenary sessions and workshops. In particular, two ongoing studies-one on valve-sparing surgical protocols and one on losartan as a pediatric treatment to slow the rate of aortic root growth-will be discussed. In addition, the challenges of the evolving diagnostic criteria for Marfan syndrome and related disorders will be discussed and evaluated in the Clinic Day practicum.