An association with 7,500 members

In 1962, Joyce Wilcox Graff, a jovial American from the suburbs of Boston, learned that her husband was affected by an extremely rare disease, von Hippel-Lindau syndrome.

Mr. Graff died in 1977 and, nine years later, Joyce learned that her son had inherited the syndrome.

In 1992, thirty years after learning her husband's diagnosis, Mrs. Graff met for the first time a member of another VHL family.  It was a woman whose story was much like her own.  She was also the wife of a man with VHL.

"We talked together for several hours, and I learned more in that one conversation than in the three previous decades," says Mrs. Graff. "It did us both a great deal of good!  We decided, after enlisting a third woman in our situation, to set in motion an association where affected families could exchange information and support one another."

Founded in 1993 and with a website on the Internet, the VHL Family Alliance has had an astonishing success, a sign that they respond to a very real need.  The organization now comprises 7500 people in 37 countries.  Twenty years ago, the doctors told the Graffs that there were only nine affected families in the world.  It is now clear that it is nowhere near as rare as that!

"Making contact with other people who have the same problems can help people manage their health and find out about new treatments," says Mrs. Graff.   "Our goal is to invite doctors and patients to join the chain of information about VHL that now exists around the world.  VHL is so rare that few doctors are familiar with it.  The families must become their own experts on VHL and work as a team with their doctors to receive the best care."

The Internet address of the VHL Family Alliance is http://www.vhl.org.   There one will find pages in different languages: in addition to English there are Spanish, Japanese, German, and Danish.

There is also a French website, maintained by Paul B., the head of the Canadian affiliate of the Alliance, as well as a Belgian page, at the following address: http://www.vhl.org/fr

Read the full spread of articles on VHL from La Presse, 29 March 1998:

• A happy life, thanks to the Internet and research
• Paul's kidneys will be saved
• An association of 7,500 members (above)
• Research on VHL may lead to a cure for kidney cancer
• Cancer predisposition factors

The French original: Une belle vie, grâce à Internet et à la recherche