It was the first time William Kaelin, M.D., encountered a World Wide Web browser, which provides high-speed computer access to information on every topic under the sun. So what did he type in? "von Hippel-Lindau".

What sprang to his screen was a listing by an organization he had never heard of -- the VHL Family Alliance -- whose Director, Joyce Graff, lives in Brookline. He called her, told her about his work and. last year, was one of the speakers at the organization’s annual meeting in Hawaii. The organization also made a $7,000 contribution to support his research. In 1997, an additional $20,000 grant was awarded to Dr. Othon Iliopoulos of Kaelin’s team.

The VHL Family Alliance was founded in 1993 by Graff and two others whose lives had been touched by the rare syndrome. Graff lost her husband, Frank, to VHL in 1977, and her son has VHL. The group’s membrship now numbers more than 7,500 people in 37 countries.

The extreme rarity of VHL makes the support and information provided by the family alliance all the more important, Graff says, recalling that she and her husband went 30 years without meeting another family with VHL. "This is a complex syndrome which can take different forms in different patients," she says. "It’s important that people be able to contact others who have gone through the same experience -- who can help them manage their health and learn about treatments. Our goal is to help patients and physicians tap into the chain of information about VHL that does exist all around the world."

The organization makes an annual research award to a scientist in the field of VHL research. "The disease is so rare that few doctors are familiar with it," Graff says. "Families must become experts in the disease and work with doctors as a team to ensure the best care. Our annual research grants are given in that spirit of partnership."

As published in the 1997 Research Report