One of our primary goals is to improve diagnosis of VHL, so that people will obtain a correct diagnosis as early as possible. This means not only working toward better methods of diagnosis, but also raising consciousness of VHL among health professionals and the general public, to increase the likelihood that a diagnosis of VHL will be considered as an option.

In the past two years the Alliance has grown from a seedling of an organization into a strong tree with far-reaching branches. In this issue you meet our newest affiliate, VHL France. We now reach more than 3400 individuals with VHL in twenty countries. Most of these people already knew they had VHL. But there is a growing number of people newly diagnosed.

More health professionals today are aware of VHL than ever before. Two physicians called recently to thank us for our information, which finally solved mysteries they had been wrestling with for two to five years -- their patients have VHL. Just in the last two months we have spoken with five affected people who learned for the first time the name von Hippel-Lindau. In some cases, it is clear that VHL had been in the family for generations, without the right diagnosis. In two cases, like the one on page 6 of this issue, this may prove to be the first case of VHL in the family.

The number of identified individuals affected with VHL is rapidly increasing. Thirty years ago few people would have believed there were even a dozen in each country. Registry projects in England (Dr. Eamonn R. Maher, Cambridge), Germany (Dr. Hartmut Neumann, Freiburg) and France (Dr. Stéphane Richard, Paris) and examination of registered cases of hemangioblastoma and kidney cancer have found hundreds of previously undiagnosed cases of VHL. The geneticists' estimates of one in 38,000 people are looking more and more probable.

There are estimated to be 7,000 people with VHL in the United States alone. That's more than three times the number estimated to have a diagnosis today. Once people obtain a correct diagnosis they can obtain the information and assistance they need to manage their health. Please help us spread the word about VHL

As published in the VHL Family Forum, 3:1, March 1995. For permission to reprint, please contact the VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.