Dialogue with Members

"I sent you an email about a patient newly diagnosed with VHL. Thanks to you and to the leads that came from the leads you gave me, I was able to finally convince my patient and his physicians to consider an alternative to bilateral total nephrectomy. He had surgery in January, and his urologist removed only one and one-third kidneys--my patient is cheerful, feeling well and back to work, and I appreciate your help very much." -- Linda Randolph, M.D., Medical Director, Prenatal Genetics, Alfigen/The Genetics Institute

"I am recovering quietly at home since my successful operation. My wife and I can’t thank you enough for what you and the Alliance have done to promote VHL since you started five years ago. Without your action, I would be on hemodialysis today with a lesser quality of life. Thanks for everything." – Paul B., Canada

"It’s impossible for me to express how grateful I am for the VHLFA and the entire international VHL team. Whether or not any cure or other advancements personally benefit me in my lifetime, you have helped me, and many others, to lighten up a very dark room and get on with living!" – Nelson B., Utah

Teen Talk! A series of questions and answers has been posted on the new Teen Page on the internet at http://www.vhl.org/teens.  The site includes special "beginner materials" prepared for people who have been diagnosed through DNA testing and who have no symptoms.  Our goal is to provide information so that you can manage your health, and stay at least as healthy as you are today!