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UCLA Named Clinical Care Center for Rare Genetic Disorder

Date: 06/30/2009
Contact: Rachel Champeau ()
Phone: 310-794-0777


The Ronald Reagan UCLA Medical Center was named a clinical care center for a rare genetic disorder called von Hippel-Lindau (VHL) syndrome by the nonprofit VHL Family Alliance. The announcement was made at the organization's annual meeting in Anaheim, Calif., on June 27.   

A genetic condition involving the abnormal growth of blood vessels, VHL can lead to tumor growth in specific areas of the body such as the eyes, spine, brain and internal organs. The onset typically begins in the teens or early twenties. 

Left to right: Camron King, Calvin Cieslak, Dr. Michael Yeh, Dr. Allan Pantuck , Michelle Cieslak, Joyce Graff
 
As a clinical care center, UCLA physicians will monitor patients and provide coordination amongst medical specialties in providing care. One in 32,000 persons worldwide has VHL and there currently is no cure for the disease. UCLA is the only VHL clinical care center in California. Interested patients can access information on the following UCLA web site: www.endocrinesurgery.ucla.edu or by calling (310) 206-0585. 

"We are pleased to be a part of this growing network of institutions worldwide providing coordinated care for this rare patient population," said Dr. Michael Yeh, assistant professor of surgery and endocrinology, who will direct the VHL clinical care program at UCLA.

"We are delighted to welcome UCLA into the program," says Joyce Graff, executive director of the VHL Alliance. "UCLA is an outstanding medical center. Adding this team approach makes all its services much more approachable for people with VHL. When we refer someone to Dr. Yeh's office, we know that we are connecting them with the team of specialists that it takes to manage VHL - urologists, neurosurgeons, ophthalmologists, etc. It takes teamwork to truly manage your health."

The VHL Alliance is a nonprofit organization that provides information for families and physicians about this disorder and local self-help support groups for families affected by VHL. It is dedicated to improving diagnosis, treatment and quality of life for individuals and families affected by Von Hippel-Lindau disease.
http://www.vhl.org/

The UCLA Health has been a leader in patient care, medical research and teaching for more than 50 years. Today, our physicians provide an array of cutting-edge and research-based primary and specialty services in four hospitals on two campuses, and in numerous outpatient clinic locations. Composed of the UCLA Hospital System and the UCLA Medical Group and its affiliates, the UCLA Health has provided the best in health care and the most advanced treatment options to the people of Southern California, the U.S. and around the globe. UCLA's preeminence in health care - a strength that comes from the union of research, teaching and excellence in patient care - continues to be recognized nationally and internationally. The clinical programs of Ronald Reagan UCLA Medical Center, Santa Monica-UCLA Medical Center and Orthopaedic Hospital, the Resnick Neuropsychiatric Hospital at UCLA, and Mattel Children's Hospital UCLA comprise a system of hospital care that has been ranked among the best in the nation. UCLA physicians and hospitals continue to be world leaders in the full range of care, from maintaining the health of families to the diagnosis and treatment of complex illnesses.  http://www.uclahealth.org/

-UCLA-

Contact:

Rachel Champeau, rchampeau@mednet.ucla.edu     
(310) 794-0777

Joyce Graff, director@vhl.org   
(617)835-6949