Professional Information

See also Index of Medical Topics

• VHL Handbook: What you Need to Know about VHL
• Suggested Protocol for Screening
• Updating the Screening Protocol
• Recommended Reading
• 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
• 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
    Phone: 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
    Phone: +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
• Information on adnexal papillary cystadenoma in women
• Information on diagnosis of pheochromocytomas and paragangliomas
• RCC - differential diagnosis with BHD and HLRCC
• Index for Medical Professionals

Information for your Patients

• VHLFA Chapters are 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 Newsletter
• Family Index of Articles
• Online discussion groups (Inspire.com)
• Other support channels

VHL Symposia (biennially)

• Reports of Prior Symposia

Annual Meetings

• 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

Click here for the 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.