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The Prader-Willi Syndrome Association (USA) (PWSA-USA) has created this privacy statement in order to demonstrate our firm commitment to privacy. The web site address (URL) is  Access is free and anonymous.

This Web site takes every precaution to protect our users' information. All of our contact database information is restricted to viewing by designated personnel.  Only employees or volunteers who need the information to perform a specific job (e.g., our Finance department) are granted access to personally identifiable information.

PWSA (USA) is the sole owner of the information collected on this site or in surveyís and membership forms mailed from the office.   We will not sell, share, or rent this information to others in ways other than those outlined in this statement

Information you provide about yourself

At no time are you required to give any information about yourself to access the web site. Our site uses an order form for visitors to order publications, become members, or register for our national conference.   In the event you choose to provide this information, we collect contact information (like name, address and e-mail address) and financial information when appropriate (like account or credit card numbers). Contact information is used to send orders, newsletters, and information about the association.  Financial information is used to bill for products ordered, pay for membership or conference, or for donations received.  Information collected is used solely by PWSA (USA) and is not distributed to any third parties.

Your mailing address, telephone number, and/or email address, will be provided to our parent-oriented state chapters and affiliations only with your permission.  Information on parents of newly diagnosed children is also shared with new parent mentors only with your permission.  Information which identifies a specific individual will not be disclosed to others without the userís permission unless necessary to provide services which the user has requested.

Research Surveys
From time to time our site gives information on research and researcherís surveys.  This information is first screened and approved by our medical boards.  Participation in the research or surveys is entirely voluntary and your name and address are not given out without your permission. 

We will only share aggregate information with our scientists and membership.  This aggregate information does not contain personally identifiable information and therefore cannot identify any specific individual

Please note that this site contains links to other web sites. PWSA (USA) is not responsible for the privacy practices or the content of such linked web sites.

Our use of information about you

We will generally respond to you by postal service mail, e-mail or telephone, depending on your requests and our resources. If you provide your postal address, telephone number or e-mail address to PWSA (USA), you may receive any of the following periodic contacts from us:

  • Mailings with information about additional PWS related resources, programs, services and events.
  • Mailings that invite you to join the association, to subscribe to our newsletter, or to help PWSA (USA) achieve its mission;
  • Telephone contact with information about orders or registration you have placed online, as well as additional PWS related information;
  • Telephone contact to invite you to join the association, or to help PWSA (USA) achieve its mission;
  • E-mail contact to respond to your questions, comments or suggestions.

Is Credit Card Information Secure?
We care about the safety and security of your transaction. We use high grade encryption and the https security protocol to communicate with your browser software. This method is the industry standard security protocol, which makes it extremely difficult for anyone else to intercept the credit card information you send to us. Companies we work with to process credit card transactions also use high grade encryption and security protocols.

8588 Potter Park Drive, Suite 500
Sarasota, FL 34238
phone: 800-926-4797
fax: 941-312-0142

Public forums

This site now has or may from time to time make available chat rooms, forums, message boards, eGroups and/or news groups for our users. Please remember that any information that is disclosed in these areas becomes public information and you should exercise caution when deciding to disclose your personal information.



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