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10-12 October 2008
German National Meeting
Hannover, Germany

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This course is directed to physicians, urologists, neurosurgeons, ophthalmologists, family members and other interested professionals who manage patients with Von Hippel Lindau (VHL) disease.

As a result of attending the course the participate will be able to:

• Understand what VHL disease is.
• Be familiar with genetics and genetic testing for VHL disease.
• Understand the renal/adrenal manifestations of VHL and their surgical/medical management.
• Be familiar with rehabilitation and psychosocial concerns in genetic/chronic diseases.
• Be familiar with the VHL Family Alliance and the services it provides.

CLEVELAND CLINIC FACULTY

UPDATE ON VHL

Friday, October 11, 2002

9:00 to 12  VHL 101 with Joyce Graff

   This session is strongly recommended for first-time patient and family attendees.  Medical professionals are welcome too.  You will learn basic concepts that will be discussed in detail in the meeting, and have a chance to meet the Board and other attendees.  Meet lots of other folks just like you!  Please advise if you plan to attend (click here).

12:00 – 1:15 p.m. Registration

1:15 - 1:30 pm Welcome/Introductions - Dr. Goldfarb/Dr. Uzzo

1:30 – 1:45 p.m. The VHL Family Alliance Story-  Joyce Graff

2:00 – 2:20 p.m. Defining the problem: VHL as a multisystem disorder - Dr. Uzzo

2:20 – 2:45 p.m. VHL Clinical Care Center - Patricia Rasmussen

2:45 – 3:30 p.m. The VHL gene: Identification and Significance - Dr. Liou
                            Microarrays, VHL gene, pVHL
                            Where we are and where we are going

3:30 – 3:45 p.m. Break

3:45 – 4:15 p.m. Genetic Testing for VHL - Dr. Brian Clark

4:15 – 4:45 p.m. Preimplantation testing for genetic disorders - Dr. Brian Clark

4:45 – 5:00 p.m. Discussion/Questions

Saturday, October 12, 2002

7:30 – 9:00 a.m. Continental Breakfast

9:00 – 9:30 a.m. Advances in diagnostic imaging - Dr. Erick Remer

9:30 – 10:00 a.m. VHL and endolymphatic tumors - Dr. Peter Weber

10:00 – 10:30 a.m. VHL and the eye - Dr. Jonathan Sears

10:30 – 11:00 a.m. VHL and the central nervous system - Dr. Gene Barnett

11:00 – 11:30 a.m. VHL and the Pancreas - Dr. R. Matthew Walsh

11:30 – 12:00 p.m. Panel discussion/questions

12:00 – 1:30 p.m. Lunch

1:30 – 2:00 p.m. VHL and the Kidney: Natural history, biology of RCC
                        Observation of the small lesion - Dr. Robert Uzzo

2:00 – 2:30 p.m. VHL and the Kidney: Minimally Invasive and
                        Nephron Sparing Surgery - Dr. Andrew Novick

2:30 – 3:00 p.m. VHL and the Kidney: Transplantation - Dr. David Goldfarb

3:00 – 3:30 p.m. VHL and the Kidney: Medical Treatment
                        of Advanced Disease - Dr. Thomas Olenki

3:30 – 4:00 p.m. VHL and the adrenal: Laparoscopic Approaches - Dr. Andrew Steinberg

4:00 – 4:30 p.m. Panel discussion/questions

Sunday, October 13, 2002

7:30 – 8:30 a.m. Continental Breakfast

8:30 – 9:15 a.m. Physical/Occupational Rehabilitation in Chronic Disability - Dr. Frederick Frost

9:15 – 10:00 a.m. Psychosocial concerns in genetic/chronic disorders - Dr. Joseph Locala

10:00 – 10:15 a.m. Break

10:15 – 10:45 a.m. Insurability/Legal Issues - Victoria Vance

10:45 – 11:15 a.m. Review of Web Resources for VHL - Joyce Graff/ Maria Shipton

11:15 – 11:45 a.m. Questions/Meeting Summary - Graff/Goldfarb/Uzzo

TRAVEL ARRANGEMENTS

All attendees must make their own travel and hotel arrangements.  All sessions will be held in the Marriott Airport hotel, Cleveland, Ohio.  For hotel reservations, call Marriott at 1-800-228-9290 or (216) 252-5333  

REGISTRATION

is being handled by Cleveland Clinic

This meeting has taken place, so registrations are no longer open.

To register for VHL 101, please just send an email to Joyce. or call 1-800-767-4VHL.  The session is 9-12 Friday morning.  Meeting room information will be available from the hotel concierge.