1999 VON HIPPEL LINDAU FAMILY ALLIANCE CONFERENCE

1999年冯·希佩尔·林道家族联盟会议

• 批准号: 2898567
• 负责人: JOYCE Wilcox GRAFF
• 金额: $ 1万
• 依托单位: VHL ALLIANCE
• 依托单位国家: 美国
• 财政年份: 1999
• 资助国家: 美国
• 起止时间: 1999-06-22 至 2000-06-21
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/2898567
• 关键词: autosomal dominant trait; brain neoplasms; eye neoplasms; hemangioma; information dissemination; meeting /conference /symposium; syndrome; travel

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.

VHL家庭联盟和埃默里大学医学中心第五届von Hippel-Lindau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，以传播有关von Hippel-Lindau综合征治疗和正确诊断的最新发现。 随着用于诊断和治疗von Hippel-Lindau综合征的各种表现的新技术的发现，将这些信息传播给医疗专业人员以及受von Hippel-朗道影响的患者和家属变得越来越重要。 我们将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，我们将提供有关神经，眼科，眼科，泌尿科和内分泌学方法的诊断和治疗冯希佩尔林道的讨论和结果。 会议还将包括正在进行的研究现状的介绍，我们希望这将确定是什么原因导致VHL基因发生故障，并揭示纠正故障的可能解决方案。 会议将包括遗传咨询师关于应对von Hippel-Lindau挑战的演讲。 也将有病人讨论冯希佩尔-林道在他们的工作环境的影响，以及由病人的介绍提供他们的生活故事，冯希佩尔-林道如何改变了他们的生活，他们如何适应生活与这种综合征。 安排了几次小组讨论，供医疗专业人员讨论他们的治疗建议。 公开小组讨论也安排为病人和家属提出的主题，特别是具有挑战性的。