PROFESSIONAL INFORMATION

• VHL Handbook: What you Need to Know about VHL
• Von Hippel-Lindau disease, by Lonser et al, U.S. National Institutes of Health, 2003
• Most recent update of our Suggested Protocol for Screening
• List of top references for VHL, many of which are available online.
• Index of articles on this website on specific areas of VHL involvement
• VHLFA Clinical Care Centers program helps you identify and collaborate with others experienced in VHL in your area
• Sources of DNA Testing in your area
• New information on adnexal papillary cystadenoma in women
• Latest information on diagnosis of pheochromocytomas and paragangliomas.
• RCC - differential diagnosis with BHD and HLRCC
• Please deposit surgically removed tissue in the VHL Tissue Bank. The Tissue Bank is on-call 24 hours a day — please call soon after death to deposit tissue for research. Tissue must be recovered within 24 hours to be useful for research.
In the U.S. or Canada, contact the Rare Disease Coordinator
1-800-222-6374 or +1 (215) 557-7361
Fax: +1 (215) 557-7154
In Britain, call Dr. Eamonn R. Maher
Genetics, Birmingham Women's Hospital
+44 121 627 2741; Fax: +44 121 627-2618
E-mail: E.R.Maher@bham.ac.uk
In France, call Dr. Stéphane Richard
Oncogenetics, Kremlin-Bicêtre Hospital
Phone/Fax: +33 (1) 49 59 67 28
E-mail: stephane.richard@kb.u-psud.fr

Information for Doctors

• Stereotactic Radiation
• Radio Frequency Ablation
• Many other topics listed in the Index for Medical Professionals

Information for your Patients

• VHLFA Support Chapters in most geographic regions of the United States, Canada, and nine additional countries. We are in touch with families with VHL in 102 countries. Call or write to make contact with others in your area, or simply give your patient our number: 1-800-767-4VHL or +1-617-277-5667 or info@vhl.org.
• VHL On-line Newsletter
• Index of articles on family topics

VHL Conferences (regionally) and Symposia (biennially)

• Other forthcoming meetings
• September 2008, Symposium in Roskilde, Denmark
• October 2006, Symposium in London, Ontario
CME credits awarded by University of Western Ontario
• May 2004, Symposium in Kochi, Japan
• June 6-8, 2002, Symposium in Padua, Italy
• October 11-13, 2002, Cleveland, Ohio
CME credits awarded by Cleveland Clinic
• July 2000, Symposium, Rochester, Minnesota
25 CME credits awarded by Mayo Clinic
• June 2001, Palo Alto, California
13 CME credits awarded by Stanford University
• Reports of prior meetings

An Information packet may be requested from our publications office

Succinct information on asymptomatic screening and monitoring of specific conditions. Materials appropriate for patients, plus key medical articles with pointers to more detailed information.

We can supply brochures to share with patients and colleagues. Samples come in your information packet, and more can always be obtained from VHLFA

Newsletter

The VHL Newsletter contains articles of interest to health professionals as well as family members. See the Online version to assess whether you would like to subscribe to the print copy, or whether the Online version with its search capabilities is sufficient for your needs. Many people use both.

New Monographs on VHL available over the internet

Inquiry service

Feel free to call or write with any question. If we do not have the answer at hand, we will put you in touch with an appropriate expert who can assist.

Thank you for helping to improve diagnosis, treatment, and quality of life for even one person with VHL.