1999 VON HIPPEL LINDAU FAMILY ALLIANCE CONFERENCE

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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.