We are grateful to the Neurogenetics Department of the Massachusetts General Hospital for hosting our Web service, to the Genetics Department of the University of Kansas Medical Center for including us on their home page for genetic counselors, and to OncoLink, a service of the University of Pennsylvania, for linking our home page under their listings for kidney cancer. Special thanks go to Dr. Stephen Tatter of Mass. General Hospital for being our very capable WebMaster, and to Fred Johnson of the United Methodist Church for coordinating our VHL Bulletin Board. Our toll-free family support hotline continues to be one of our premier services. Damon Graff, Vernon Hunsberger, Fred and Altheada Johnson, and Bob Werner have shared attending this account. Peggy and Don Marshall prepared an excellent Resource Guide for these two Committees, to ensure that they have the best current information at hand when people call.
People call with a broad range of questions and concerns.
For most people, their call is the first time they have spoken with another person with VHL outside their own families. 120 patients and family members and medical professionals gathered in Boston for two days to focus on VHL and share ideas for making it more manageable. People with VHL shared their stories, and had an opportunity to learn about diagnostic and treatment options. Medical professionals had an opportunity to hear people's stories in a very different way than they are usually told in a medical setting. Feedback from all the attendees was very enthusiastic.