Privacy Policy

This website subscribes to the HONcode principles of the international Health on Net Foundation, to assure you of the highest quality of health information.

Medical information on this site is reviewed by our Clinical Advisory Council.

Information provided on is designed to support, not replace, the relationship that exists between a patient or site visitor and his or her physician.

This website does not accept advertising. It is supported solely by donations from people with VHL, their friends, their families and supporters, and physicians and researchers interested in VHL.

The VHL Alliance is committed to respecting your privacy and will take all reasonable steps to process information in accordance with the EU General Data Protection Regulation (GDPR) 2018.

All personal details, including name, address, phone number, e-mail address, birthdate, medical information, and donations amount, that you provide to the VHL Alliance are kept entirely confidential. These details are shared within this organization among staff and volunteers for the purpose of providing service to you but are never shared with, rented or sold to other organizations. All staff and volunteers have made confidentiality agreements to protect your information. To verify your information or send corrections, please contact us.

The information you submit to us voluntarily through this website is stored on our secure server using SSL encryption technology.

Should you have questions about VHL Alliance’s privacy policy, please email us at [email protected].

Computer Tracking and Cookies
This website is not set up to track, collect or distribute personal information not entered by visitors. Our site logs do generate certain kinds of non-identifying site usage data, such as the number of hits and visits to our sites. This information is used for internal purposes by technical support staff to provide better services to the public and may also be provided to others, but again, the statistics contain no personal information and cannot be used to gather such information.

This website also recognizes the online site where a visitor searched to find a subject which brought them to the VHL website, but we cannot identify the visitor or the visitor’s address. Site information is used to help us serve these search sites with the correct information about our material, No personal information is collected.

A cookie is a small amount of data that is sent to your browser from a Web server and stored on your computer’s hard drive. VHLA does not use cookies in its web pages. We do not generate personal data, do not read personal data from your machine and do not store any information other than what you voluntarily submit to us.

Google Analytics
Currently we are using Google Analytics to analyze the audience of the website and improve our content. No personal information is collect from Google Analytics. For further information on the privacy policy concerning Google Analytics, please go here,

Text Message / SMS
By providing phone number information to the VHL Alliance, you are consenting to receive SMS/TEXT based on the data provided. 

Problems or Complaints with VHLA Privacy Policy
If you have a complaint about VHLA compliance with this privacy policy, you may contact us at [email protected].

Links to Third Party Sites
The links included within the service may let you leave this site. The linked sites are not under the control of VHL Alliance and VHLA is not responsible for the contents of any linked site, or any link contained in a linked site, or any changes or updates to such sites. These links are provided as a convenience only, and the inclusion of any link does not imply endorsement by VHLA of the site or any association with their operators.

Advertisement Policy
Our website does not host any form of advertisement.

If you have technical questions about this site, please contact: [email protected].