The 1997 edition of the VHL Handbook will soon be on the Internet, and will be printed and distributed to all members with the June issue of the newsletter. The intention of the Handbook is to provide a basis of information for the patient, the family, and the health care team about this rare condition. Because information about VHL is not widespread, the VHL Family Alliance works to provide a chain of information that people everywhere can tap into. It consists of the Handbook, the local support chapters, the telephone and internet information lines, our Medical Advisors, and centers of expertise throughout the world. If you don't find the information you need in the printed material, call or write and we will do our best to connect you with the expert you need.
Single copies are available free of charge, limited to one copy per family.
As published in the VHL Family Forum, newsletter of the VHL Family Alliance, March 1997.