) 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.
