Cleveland Meeting: October 11-13, 2002

Update on VHL: 
An Integrated Medical Approach to a Multisystem Disorder

David Goldfarb, M.D., Head of Transplantation, Urological Institute, Cleveland Clinics Foundation, Cleveland, Ohio

The Cleveland Clinic Foundation and the VHL Family Alliance will sponsor a continuing medical education event for primary care physicians, nurses, and genetic counselors to be held at the Marriott Airport Hotel, October 11-13, 2002. The meeting will be chaired by Dr. David Goldfarb of the Cleveland Clinics and Dr. Robert Uzzo of the Fox Chase Cancer Center. Continuing Medical Education credits will be awarded by Cleveland Clinic to physicians and genetic counselors for the sessions they attend.

Because VHL crosses so very many medical specialties, it is a challenge for any health care professional to follow a patient with VHL. Without the cooperation and close collaboration of the patient and the family, it is practically impossible. For this reason we always work to engender a partnership between the families and their health care professionals.

The agenda includes a survey of the medical issues in VHL, diagnostic techniques and treatments, including legal and insurance issues and stress management. A special session is included on pre-implantation testing for VHL. Because of the expertise of the Cleveland Clinics in kidney issues, the program is particularly strong in kidney.

Robert G. Uzzo, M.D., Urologic Oncology, Fox Chase Cancer Center, and Assistant Professor, Temple University School of Medicine, Philadelphia, Pennsylvania.

Families are welcome to attend this meeting. In the nine years since we began holding "patient/provider conferences," we and the physicians who have attended have come to believe strongly that it takes teamwork to manage VHL. The patient has an important role to play, and empowering the patient is good both for the patient and for the physician.

The conference is a wonderful opportunity to meet others with VHL. Andy noticed at his first meeting that other people also had "zippers" peeking out beneath the hairline. Tania noted that "all the women were wearing sensible shoes." Gale bumped into another person and both said in chorus, "Excuse me, that’s my blind side." You will learn quickly that you are not alone, and that other people with VHL are just like you! -- nice, normal people with a health challenge to manage.

If you have not previously attended a VHLFA conference, you are encouraged to attend VHL 101, an introductory session with Joyce Graff on Friday morning (9:00 to 12) before the formal start of the conference at 1:00. You will have an opportunity to meet other attendees and VHLFA Board members, and gain an understanding of terms and concepts that may be new to you, especially in parts of the body with which you have not dealt before. The VHL 101 segment is free, but we ask you to register so that we know how many people to plan for. 

For the full draft agenda and registration information, see http://www.vhl.org/conf2002  For hotel reservations, call Marriott at 1-800-228-9290 or (216) 252-5333