Von Hippel Lindau Patients and Families Unite in Houston

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MD Anderson is partnering with the Von Hippel Lindau (VHL) Family Alliance to host the 2011 VHL national meeting on June 18 at MD Anderson's Dan L. Duncan Building.

The meeting is open to patients, family members and health care providers involved in the treatment of Von Hippel Lindau disease. Experts from the National Institutes of Health, MD Anderson and around the country will discuss recent advances in VHL therapy. Attendees are encouraged to arrive the night before so that they can meet the speakers in an informal setting.

Von Hippel Lindau disease is an inherited mutation of the VHL gene, which causes tumors to form in areas of the body that contain large numbers of blood vessels. VHL affects one in every 32,000 children born in the United States.

A mutation of the VHL gene can affect several organs of the body and can be expressed differently in every patient and every family.

It's crucial that patients and families living with Von Hippel Lindau disease have their care coordinated by a team of doctors and counselors with expertise in the various aspects of their care. Proper genetic testing, appropriate screening and appropriately timed therapies are all important aspects of any treatment plan for VHL.

Eric Jonasch, M.D., associate professor in the Department of Genitourinary Medical Oncology, will be discussing new clinical trials for this disease.

For more information or to register for the event, visit

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