VHL or Von-Hippel Lindau disease is a genetic condition characterized by the formation of multiple blood vessel tumors in many organs of the body. These include the eye, pancreas, kidney, lung, liver, and some of what are called the pelvic organs or adnexal organs. WeÕre one of 10 comprehensive centers in the United States that provide care from birth to older age, so across a personÕs life. About 80 percent of people with VHL actually have a family history of it. So if a parent knows that they have VHL, we would want to make sure that their children are offered testing to see which of their children have it, and sometimes more importantly, which of their children donÕt have it and donÕt need that extra surveillance. However, about 20 percent of people with VHL do not have a family history of it, and so most of those patients are identified a little later in life when some of the symptoms start to be diagnosed. The frequency of their screenings is really dependent on their age and their presentation. Typically, we like to see patients annually, but not all screenings are done annually. So thatÕs where, at those annual appointments, we really individualize an approach based on the clinical presentation as well as the family history. When treatment is needed, the treatment can really vary from surgery, which really is the backbone for treatment of most of the nervous system tumors, to various types of targeted chemotherapy. Understanding how those individual tumors behave lets us develop an individualized treatment plan. Several treatments are available for the lesions of VHL in the eye, depending on the size. If it is a smaller lesion, freezing treatment or laser could be sufficient to control the disease. For larger lesions, we use injection medications similar to those used in macular degeneration or vein inclusion to try to control the exudation. ItÕs world class health care. So if youÕve been diagnosed with VHL, you probably already realize youÕre going to have to see a number of specialists throughout the course of treatment. Those specialists are right here at UVA. We work with the patient and the patientÕs family. Family being defined however the patient defines it. So family can mean your neighbors who are helping you through this process, it can mean your church family, or it can mean those people youÕre related to. We could meet with them only when theyÕre coming for appointments. We could provide telephone support. We could meet with a patient as frequently as weekly or twice a week if thatÕs what it takes to meet their emotional needs.