The VHL Family Alliance provides information for families and physicians about this disorder, and local self-help support groups for families affected with VHL. Local family support chapters exist in regions of the U.S. Local chapter meetings are scheduled periodically. International VHL Support Organizations are established on six continents.
The VHL Family Alliance Unveils Updated Name
BOSTON, Sept. 27, 2013 /PRNewswire/ — As the leading resource for von Hippel-Lindau (VHL) and related tumor conditions, the VHL Family Alliance is pleased to unveil an updated name and appearance. The new name, VHL Alliance, along with an updated logo reflects the organization's commitment to research, education, and support to improve diagnosis, treatment, and quality of life […]
BOSTON, Sept. 10, 2013 /PRNewswire/ — The von Hippel-Lindau Alliance (VHLA), the leading resource for von Hippel-Lindau (VHL) and related tumor conditions, is pleased to honor Dr. James Edward Montie, Valassis Professor of Urology, Former Chair of the Department of Urology, and Senior Urologist of the University of Michigan Health Systems, and Fran Mott, long-term Chapter Leader of the […]
BOSTON, Nov. 1, 2012 /PRNewswire/ — The von Hippel-Lindau Family Alliance (VHLFA), the leading resource for von Hippel-Lindau (VHL) and related tumor conditions, is pleased to honor Joyce W. Graff, Founding Executive Director of the VHL Family Alliance and William G. Kaelin, Jr, MD of Dana Farber Cancer Institute, Brigham and Women's Hospital, and Harvard […]
VHL Family Alliance Launches New Website
VHL Family Alliance's 20th Anniversary Marked with Fresh New Information Portal BOSTON, Aug. 20, 2012 — The von Hippel-Lindau Family Alliance (VHLFA), the leading resource for von Hippel-Lindau (VHL) and related tumor conditions, is pleased to announce the launch of its new, user-friendly website, http://www.vhl.org. The goal of the new site is to provide visitors […]
Become More Educated About von Hippel-Lindau
BOSTON, Nov. 22, 2011 — On Thursday, November 10, 2011, Grey's Anatomy character "Henry Burton" played by actor Scott Foley died from complications from von Hippel-Lindau (VHL). Foley's character introduced the rare genetic disease to mainstream media and now it is our task to continue educating the world about VHL and one day find a […]
Dr. Ilene Sussman to Head the VHL Family Alliance International
BOSTON, Sept. 8, 2011 — The Board of Directors is pleased to announce that Ilene Sussman, Ph.D. has been appointed as the new Executive Director for the VHL Family Alliance International, effective September 6. Von Hippel-Lindau (VHL) is a genetic cancer that causes benign and cancerous tumors in six different organ systems. Sussman joins the […]
VHL Family Alliance Applauds Grey’s Anatomy for Featuring von Hippel-Lindau Disease
BOSTON, Dec. 13, 2010 — The second episode in a three-part series on Grey's Anatomy features a patient with von Hippel-Lindau disease (VHL). The next new episode in the show is expected to air on January 6. The first episode, "Adrift and at Peace," aired Dec. 2 (http://tinyurl.com/vhlstory1). VHL is a rare disease, a genetic […]
