Our Guestbook online allows people to post notices looking for pen pals or other kindred spirits. Our toll-free family support hotline continues to be one of our premier services. Damon Graff, Vernon Hunsberger, Fred and Altheada Johnson, Bob Lydon and Phill Terry have shared attending this account. Peggy and Don Marshall prepared and continue to maintain an excellent Resource Guide for these two Committees, to ensure that they have the best current information at hand when people call. These materials are also used as a base for local affiliate groups in other countries.
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. We had 130 people in attendance, the largest attendance we have had to date, and the highest percentage of physicians we have had so far. Feedback from all the attendees was very enthusiastic. Strong synergies were created by addressing these two hereditary conditions, both of which include pheochromocytoma. The meeting was held in Noordwijkerhout, the Netherlands, chaired by Dr. Cornelius J. M. Lips of the University of Utrecht.