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Fourth International Symposium on
von Hippel-Lindau Disease
20-23 July, 2000
Phillips Hall, Mayo Clinic
Rochester, Minnesota
Organized by
Department of Medical Genetics, Mayo Clinic
and the VHL Family Alliance
Conference Chairpersons
Virginia Michels, M.D., Rochester, Minnesota
Kelly T. Heselton, Lakeville, Minnesota
Committee Members
Vicki Couch, M.S., Rochester, Minnesota
Lois P. Erickson, Bloomington, Minnesota
Joyce Wilcox Graff, Brookline, Massachusetts
W. Marston Linehan, M.D., Bethesda, Maryland
Hartmut P. H. Neumann, M.D., Freiburg, Germany
Patricia Rasmussen, L.P.N., Crosslake, Minnesota
Stéphane Richard, M.D., Ph.D., Paris, France
Bert Zbar, M.D., Frederick, Maryland
Official Announcement
Dear Friends and Colleagues:
It is with great pleasure that we invite you to join us at the Fourth International Symposium on von Hippel-Lindau, to be held in Phillips Hall at the Mayo Clinic, 20-23 July 2000.
The Mayo Clinic is known throughout the world as a center of excellence in medicine. This conference will bring experts from all over the world to share ideas and data, and to reach consensus on standards of care for people with von Hippel-Lindau.
Since the discovery of the gene for VHL in 1993, three Symposia have helped to accelerate progress in research and in the clinical understanding of VHL. We look forward to your participation in the Mayo meeting, where we will look at ways of moving VHL care into a new era of less invasive management and more effective preventive medicine.
-- Virginia Michels, M.D., Dept of Medical Genetics, Mayo Clinic
-- Kelly Heselton, VHL Family Alliance
Technical Language: A Symposium is intended as a forum for physicians to share information with one another. Three tracks are suggested, depending on the attendee’s background in genetics, medicine, and VHL.
Track 1: Full program. Assumes some familarity with molecular biology. Includes genetic research, genotype/phenotype alignment, and clinical management.
Track 2: Physicians unfamiliar with molecular genetics may wish to begin with Track II on Friday morning. Includes genotype/phenotype alignment studies from several countries, and clinical management practices and advances. A brief summary of the Basic Science Day will be presented on Sunday.
Track 3: Family members are encouraged to begin with Track 3 on Friday morning. Includes all clinical management sessions, with information on insurance and DNA testing. A high-level summary of the Basic Science Day will be presented on Sunday.
This activity has been planned and implemented in accordance with the Essentials and Standards of the Accreditation Council for Continuing Medical Education through the joint sponsorship of the Mayo Clinic and the VHL Family Alliance. The Mayo Clinic is accredited by the ACCME to provide continuing medical education for physicians. Mayo Clinic designates this CME activity for up to 25 hours in Category 1 credit toward the PRA of the AMA. Each physician should claim only those hours of credit that s/he actually spent in the educational activity.
Nurses and genetic counselors who pay the CME registration will receive a certificate of attendance which can be used in submitting requests to their accreditation bodies to obtain continuing education credits in their field.
Thursday, July 20, 2000 8:30-5:30
Basic Science Day (Track 1 begins here)
- 8:00 Breakfast
- Welcome: Hugh C. Smith, M.D.
- Keynote: Corey Raffel, M.D., Pediatric Neurosurgery, Mayo Clinic
- Structure of the VHL Gene and Protein
- Function of the VHL Protein
- VHL-regulated Gene Expression
- Understanding and Controlling Tumorigenesis
- Toward Gene Therapy
- 6:30 - Welcome Reception
Friday July 21, 2000 8:00 am - 12 pm and Lunch
Track 2 begins: Genotype/Phenotype Alignment, 8 am-12
- 7:30 Breakfast
- Genetic Changes: Cause and Effect
- Understanding Genotype/Phenotype Alignments
- Finding All VHL Mutations
- 12:00 Lunch
Track 3 begins: VHL 101, 8:00 am - 12 pm
- 7:30 Breakfast
- Introduction to Terminology and Concepts
- 12:00 Lunch
Friday July 21, 1 pm - 5 pm and Dinner (all tracks)
General Session: VHL Care in the New Millenium
- Keynote: Dr. Virginia Michels, Genetics, Mayo Clinic
- Creating Partnerships
- VHL Clinical Care Centers
- Ethical, Legal, and Social Issues
- 6:30 - Conference Dinner
Saturday July 22, 2000 8:00 am – 5:00 pm (all tracks)
Optimal Clinical Care
- 7:30 Breakfast
- Keynote: W. Marston Linehan, M.D., U.S. National Cancer Institute
- Clinical Research Programs; Clinical Issues
- Preserving Organ Function: Adrenals
- Achieving a Diagnosis; DNA Testing
- Preserving Organ Function: Kidney & Pancreas
- Hemangioblastomas of the CNS and Retina
- Stereotactic Radiosurgery for Hemangioblastoma
Sunday July 23, 2000, 8:00 am to 1:30 pm (all tracks)
- 7:30 Breakfast
- Keynote: Jay Platt, GySgt USMC, retired, Cartersville, Georgia
- Tumor Localization and Assessment
- Radioactive Plaque Therapy for Large Eye Tumors
- Innovative Eye Treatments and Clinical Outcomes
- Progress in Research (Summary of Basic Science Day)
- Symposium Consensus Meeting; Closure
- Adjourn until Padua 2002!
Purpose: A comprehensive overview and discussion of the latest clinical and research findings on von Hippel-Lindau disease. The course will cover diagnosis and treatment of a hereditary cancer syndrome, genotype/phenotype analysis for determining cost-effective screening for each family, and advances toward treatment options based on angiogenesis inhibitors and other breakthrough modalities.
Sponsorship: The program is jointly sponsored by Mayo Clinic and the VHL Family Alliance.
Charges: The tuition charge listed includes continental breakfasts, lunches, and, dinner Friday evening, course syllabus, and other amenities involved in creating a rewarding learning experience. Minimum and maximum enrollments have been established. Cancellations prior to the program will be refunded less a $25 administration fee.
Venue: Phillips Hall, Siebens Building, 200 1st Street SW, at the corner of 2nd Ave, on the campus of Mayo Clinic, Rochester, Minnesota
Dates: July 20-23, 2000
Scientific Communications: Please send all communications concerning presentations, posters, and abstracts to Joyce Graff, Editor, VHL Family Alliance, editor@vhl.org
Language: The language of the meeting will be English.
Registration: The number of participants is limited to 300. It is recommended that you register as soon as possible. Registration fees include the Symposium, proceedings book, lunches, welcome reception, and one dinner Friday evening.
Hotel accommodations: Blocks of rooms have been reserved at the following hotels. Space is limited. Reservations must be made prior to June 28th to qualify for the VHL Symposium Conference Rate.
· The Kahler Grand Hotel 20 2nd Ave. SW, Rochester, MN 55902. Phone: +1 (507) 282-2581 Fax: +1 (507) 285-2701 1-800-533-1655 Connected to Mayo complex.http://www.rochesterlodging.com/kahler Conference rate: $75 single, $85 double.
· Rochester Marriott Hotel, 101 1st Ave. SW, Rochester, MN 55902 Phone: +1 (507) 280-6000; Fax: +1 (507) 280-8531; 1-800-533-1655. Across the street. http://www.rochesterlodging.com/marriottplaza/ Conference rate: $119 single, $129 double.
Airports: Rochester or Minneapolis/St. Paul.
- Rochester: Northwest and American Airlines flight into Rochester with connections from Chicago and Minneapolis. Shuttle vans are $9 per person one-way; reserve wheelchair accommodation at 1-800-292-1988 or +1 (507) 289-1988.
- Minneapolis: A larger number of connection options exist for flights into the Minneapolis/St. Paul International Airport (MSP), with shuttle service from the airport to Rochester by bus or van. The trip is about 90 minutes long. Phone for schedules and reservations: Jefferson +1 (507) 289-4037 or 1-800-486-9307; Rochester Direct, +1 (507) 280-9270; Rochester Express, +1 (507) 282-8673. For wheelchair accommodation call R&S Transport +1 (507) 289-5080.
Driving directions: Rochester is located 10 miles north of Interstate 90 and about 50 miles east of Interstate 35. U.S. Highway 52, a four-lane highway, connects Rochester to the Twin Cities of Minneapolis and St. Paul, Minnesota, which are approximately 90 miles to the northwest. U.S. Highways 14 and 63 also intersect the city.
Parking: on Center Street, guest and public parking for the Kahler Hotel, $9/day, with a discount for hotel guests.
Please Note:
- **All attendees must make their own hotel arrangements**
- Hotel reservations must be made by June 28 to qualify for the conference rates
- * A limited number of partial scholarships are available.
Choose Internet or Fax Registration:
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