27th Annual Conference of the National Marfan Foundation

描述（由申请人提供）： 国家马凡基金会第27届年会定于2011年7月13日至17日在俄勒冈州波特兰举行。俄勒冈州健康与科学大学和施里纳儿童医院将作为会议的共同主办方。会议将包括一次会前科学会议、两个诊所日、医学教育日和一天专门用于心理社会讲习班和支助小组。在会议期间，个人及其家属，以及临床医生和研究人员，将提供最新的信息，研究，诊断和治疗马凡氏综合征和相关疾病。在诊所，马凡氏综合征和相关疾病的专家将评估个人及其家庭，为当地临床医生提供实习机会，并为讨论马凡氏综合征和相关疾病的演变概念提供论坛。临床日实习是一个宝贵的学习经验，所有。会议提供了独特的机会，从各种角度了解马凡氏综合征和相关疾病。正是在这种综合背景下，临床医生和研究人员对进展进行了评估和讨论。这种将医学教育和研究结合在一起的独特方法也侧重于受影响个人及其家庭的人类需求，这是这一领域取得迅速进展的原因。国家马凡基金会第27届年会的具体目标是：（1）评估在理解和治疗马凡综合征和相关疾病方面取得的进展;（2）将该领域的研究工作与受影响的个人及其家庭的需求相结合并发挥协同作用;（3）教育临床医生以及受影响的个人及其家庭。 该R13补助金申请将提供必要的资金，使专业咨询委员会，其成员构成国家的马凡氏综合征和相关疾病的专家，以及选定的客座临床医生和研究人员到波特兰参加会前科学会议，在临床实习日，并在医学教育日全体会议和研讨会。特别是，两个正在进行的研究-一个关于瓣膜保留手术方案和一个关于氯沙坦作为儿科治疗来减缓主动脉根部生长的速度-将被讨论。此外，不断发展的马凡氏综合征和相关疾病的诊断标准的挑战将在临床日实习讨论和评估。

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.