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
http://www.pwsausa.org. 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
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.
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.
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
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
- Telephone contact with information about
orders or registration you have placed online, as well as additional PWS
- 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
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.