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This is the website of the Willis-Ekbom Disease Foundation, http://www.willis-ekbom.org.

Our postal address is:

Restless Legs Syndrome Foundation (doing business as Willis-Ekbom Disease Foundation or WED Foundation) / 1530 Greenview Dr. SW, Suite 210, Rochester, MN 55902

You can contact us via email at info@willis-ekbom.org or by phone at 507-287-6465.

We provide this notice to explain our online information practices. By visiting the WED Foundation at www.willis-ekbom.org (including www.rls.org or www.restlesslegs.org), you are accepting the practices described in this privacy notice.

I. Privacy Policy Statement

The WED Foundation is committed to protecting the privacy of its users. Information gathered by the WED Foundation is used to monitor the effectiveness of our site and respond to your questions and requests.

Aggregate Information

When you visit our website, our server automatically logs (records) domain name and standard anonymous information about the operating system and Web browser you are using, as provided by your Web browser. This automatically collected information is used for statistical purposes to help us manage our site and better serve the community; it does not identify you in any way.

Identifiable Information

Those of you who volunteer information about yourself by filling out an interactive form on the www.willis-ekbom.org website (such as the “eFriends form" or "discussion board form") may be interested to know the www.willis-ekbom.orgInformation Sharing Policy, which is as follows:

  • The WED Foundation does not rent or share donor information. If requests for donor information come from an WED Foundation support group or authorized affiliate entity, a cooperative effort will be made to understand the nature of the request.
  • Whenever reasonable and possible, representatives of the WED Foundation will endeavor to educate donors/prospects about their respective roles in order to assist donors/prospects in their contribution decisions.
  • Patient and family information, including, but not limited to, name, address, age and telephone number, is confidential and will only be shared with WED Foundation entities with written permission from a donor/prospect or their designee.
  • Under no circumstances will the WED Foundation provide information to outside entities, except where required by law. The WED Foundation will, upon request serve as an intermediary between donors/prospects and outside entities where deemed appropriate.
  • The WED Foundation may provide to government agencies and outside entities aggregate data on restless legs syndrome, including incidence and prevalence and number of patients served by the WED Foundation. 

II. Data Security Statement

The security of your personal information is very important to us and we are committed to protecting the information we collect. Our website, www.willis-ekbom.org, uses firewalls and has security measures in place at its physical facilities to protect against the loss, misuse, or alteration of information that we have collected from you at our website. This includes the use of Secure Sockets Layer (SSL) for processing contributions and orders securely. SSL is the proven standard for secure Web messaging transactions.

The WED Foundation reserves the right to change this policy at any time. Our privacy policy will be kept up to date and clearly posted on our website.