VON HIPPEL LINDAU ANNUAL CONFERENCES- MULTI YEAR

申请人的描述（Applicant's Description） VHL家庭联盟会议的目标，我们是 要求NIH提供的多年赠款资金是：传播当前的 关于von的医学信息和替代医学治疗 Hippel-Lindau综合征患者和不熟悉VHL的医生; 为医疗专业人员提供讨论当前方法的论坛， 治疗VHL患者的技术;提供临床 研究人员有机会向医学界展示他们的发现， 治疗VHL患者的专家;并成为网络中的链接， 提供医疗专业人员之间的国际交流， 关于希佩尔·林道的事 实现这些的方法 目标是将来自世界各地的医学专家聚集在一起， 目前治疗von Hippel-Lindau患者的方法 并讨论这些方法的成功和失败。 到 实现为患者提供替代治疗的目标， VHL，我们计划在年度会议上包括小组讨论， 包括病人和医疗专业人员讨论最低限度的 治疗希佩尔-林道综合征所需的诊断程序 的 会议包括的会议也将提供可用的选项 用于治疗冯希佩尔-林道综合征的各种表现， 这些治疗方法的影响。 需要持续不断地 关于当前治疗和诊断工具的沟通， 用希佩尔-林道综合征治疗病人 不断改进， 技术提供了治疗VHL替代方法，其中许多 医疗专业人员并不完全清楚。 由于VHL的复杂性， 我们还发现，需要对患者进行长期随访，以确定 需要改进治疗方法。

DESCRIPTION (Applicant's Description) The objectives of the VHL Family Alliance Conferences for which we are requesting multi-year grant funding from the NIH are: to disseminate current medical information and alternative medical treatments regarding von Hippel-Lindau syndrome to VHL patients and doctors unfamiliar with VHL; to provide the forum for medical professionals to discuss current methods and technologies for treatment of patients with VHL; to provide clinical researchers the opportunity to present their findings to the medical specialists treating VHL patients; and to become the link in the network that provides international communication amongst medical professionals and also amongst patients regarding von Hippel-Lindau. The method for achieving these goals is to bring medical experts from around the world together to present current approaches for the treatment of von Hippel-Lindau patients to each other and to discuss the successes and failures of these approaches. To achieve the goals of providing patients with the alternative treatments for VHL, we plan to include panel discussions at the annual conferences which include patients and the medical professionals discussing the minimum diagnostic procedures needed for the treatment of yon Hippel-Lindau. The sessions included at the conference will also provide the options available for treating the various manifestations of von Hippel-Lindau and any future impact of these treatment approaches. There is a high need for ongoing communication regarding current treatment and diagnostic tools needed for treating patients with von Hippel-Lindau. The constant improvements in technology offer alternative methods for treatment of VHL of which many medical professionals are not fully aware. Because of the complexity of VHL, we have also found that patients need to be followed over time to determine if improvements in the treatment approaches are needed.