New Leadership for VHL France

Gilles Bohlinger Hélène Sultan Gil Brunet

A new set of officers has taken the reins of VHL France. Gilles Bohlinger of Paris is now President. Hélène Sultan and Gil Brunet are members of the Board.en français

Guy Allegre continues as liaison with the office of Dr. Stéphane Richard, head of the French Study Group on von Hippel-Lindau disease. This is a worldwide group of doctors who speak French, pooling their patients and knowledge to study VHL. It includes doctors from Turkey and Tunisia, and had produced an impressive number of articles both in French and in English. The French group of patients is the second largest in the world, second only to the U.S. National Institutes of Health, and is a more representative cross-section of the VHL patient population than the U.S. group, since it includes all diagnosed patients with VHL in all of France in a single database.

Mireille and Michel Proux were honored this year for their 10 years of service to VHL France. The founded the group in 1993-94, and did the work of incorporating as a registered charity in France. Throughout the 90’s the group grew into a network with volunteers providing local support in each region of France. The Proux allied the group with the Nez Rouge, a collaborative fundraising effort for many genetic diseases in France, selling red rubber noses outside grocery stores and at fairs in order to raise money for research, with VHL’s portion going to Dr. Richard’s group.

Dr. Richard chaired the VHL Symposium in Paris in 1998, with the participation and assistance of the Proux and other local volunteers.

In the last few years, as life has changed for so many of the original volunteers, activities have slowed down and there has not been a patient meeting in France for some years. The new leadership is hoping to change that, and create more visible services again for patients and families in France.

Meanwhile, a vigorous online support group has grown up on the internet, moderated by Gil Brunet, which includes French-speaking people from all over the world, from Canada to the Indian Ocean.

We welcome Gilles, Hélène, and Gil, and wish them great success in the revitalization of VHL France!

Word of the Day...
Each day when it dawns is a blank page
A space in time that has not yet been lived.
You can write on that page whatever you want.
It is up to you to decided to have a good day,
In spite of its constraits and obligations.

Have great days! by Gil B. from The Island of La Réunion, France

As printed in the VHL Family Forum 12:2, August/September 2004. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.