It is available on audio tape and in print, in English, Spanish and Italian. An update to the Handbook is planned for 1995. We have published six issues of our quarterly newsletter, the VHL Family Forum, which has become a well respected forum for sharing ideas among families and physicians. Our toll-free family support hotline continues to be one of our premier services. This number rotates among members of the Board of Directors.
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. 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. When families are widely scattered and cared for by physicians who do not normally collaborate, it is difficult to assemble meaningful data.