1999 VON HIPPEL LINDAU FAMILY ALLIANCE CONFERENCE

VHL家庭联盟和埃默里大学医学中心第五届冯·希佩尔-林道综合征国际患者/提供者会议的长期目标是为患者和医疗专业人员提供一个论坛，传播有关冯·希佩尔-林道综合征治疗和正确诊断的最新发现。随着诊断和治疗希佩尔-林道综合征各种表现的新技术的发现，向医疗专业人员以及受希佩尔-兰道影响的患者和家属传播这一信息变得越来越重要。我们实现这些目标的方法是提供关于VHL筛查、VHL临床护理中心和VHL基因遗传学的具体讨论。此外，我们将提供关于诊断和治疗von Hippel-Lindau的神经学、眼科学、眼科学、泌尿学和内分泌学方法的讨论和发现。会议还将包括对正在进行的研究现状的介绍，我们希望这些研究将确定导致VHL基因故障的原因，并发现纠正故障的可能解决方案。会议将包括由遗传咨询师介绍如何应对希佩尔-林道的挑战。也会有患者的演讲，讨论von Hippel-Lindau对他们工作环境的影响，也会有患者的演讲，讲述他们的生活故事，讲述von Hippel-Lindau如何改变了他们的生活，以及他们如何适应这种综合征的生活。为医疗专业人员安排了几次小组讨论，讨论他们的治疗建议。我们还安排了开放小组讨论，让患者和家属提出特别具有挑战性的话题。

The long-term objectives of the VHL Family Alliance and Emory University Medical Center Fifth International Patient/Provider Conference on von Hippel-Lindau are to provide a forum for patients and medical professionals to disseminate current findings regarding the treatment and proper diagnosis of von Hippel-Lindau syndrome. As new techniques are discovered for the diagnosis and treatment of the various manifestations of von Hippel-Lindau syndrome it becomes more and more important to disseminate this information to medical professionals and the patients and family members of those impacted by von Hippel- Landau. The methods for which we will accomplish these goals are to provide specific discussions on VHL screening, the VHL Clinical Care Centers, and the genetics of the VHL gene. Additionally, we will provide discussions and findings regarding the neurological, ophthalmologic, ocular, urology, and endocrinology methods for diagnosis and treatment of von Hippel-Lindau. The conference will also include presentations on the status of the research that is underway which we hope will determine what causes the VHL gene to malfunction and will also uncover possible solutions to correcting the malfunction. The conference will include presentations by genetic counselors on coping with the challenges of von Hippel-Lindau. There will also be presentations by patients discussing the impact of von Hippel- Lindau in their work environment as well as presentations by patients' providing their life stories as to how von Hippel-Lindau has changed their lives and how they have adjusted to life with this syndrome. Several panel discussions are scheduled for medical professionals to discuss their recommendations for treatment. Open panel discussions are also scheduled for patients and family members to bring up topics which are particularly challenging.