Privacy Policy

KS&A recognizes and respects the importance of maintaining the privacy of our registered members, visitors and users, and has established this Privacy Policy as a result. The purpose of this Privacy Policy is to inform you about the personal information we may collect from you when you visit our web site, respond to our emails or otherwise contact KS&A in person, by telephone, email, fax or mail.

This Privacy Policy is part of the Terms of Use, which agreement governs your use of this web site (the “Site”).  The Site is owned by Klinefelter Syndrome & Associates (“KS&A”).

Privacy Statement Overview

KS&A is commited to safeguarding the privacy of all of our members and other visitors to our Web site.  We operate under the following set of strict privacy principles:

•   The only personally identifiable information KS&A obtains about individual visitors to its Web site is that supplied voluntarily by visitors.


•   In cases when KS&A may need personal information to provide visitors with customized content or to inform them about new features or services, visitors are explicitly asked for that information.


•   Personally identifiable information provided by visitors (name, e-mail or home address, etc.) will not be disclosed to anyone unless visitors indicate that KS&A may do so.
•   Only statistical information about our visitors as a group (usage habits, demographics, etc.) may be shared with any third-party.  Personally identifiable information will not be shared at any time without the visitor’s permission.
•   KS&A employs strict security measures to safeguard online transactions; personal information is stored in a secured database and always sent via an encrypted Internet channel.
•   We will notify our users if we make significant changes to our privacy policy that may affect the use of health-related information, and we will obtain consent from the individuals who are the subject of that information for any new uses of that data.

The following sections disclose KS&A’s information gathering and dissemination practices for the Site.

IP Addresses

An IP address is a number automatically assigned to your computer whenever you access the Internet.  All computer identification on the Internet is conducted with IP addresses, which allow computers and servers to recognize and communicate with each other. KS&A collects IP addresses in order to conduct system administration and to conduct site analyses.  KS&A reserves the right to report aggregate information regarding our members and visitation to the Site to sponsors and advertisers, provided that personally indentifiable information will not be shared with any such third-party without the express permission of the individual who is the subject of that information.  If a visitor requests pages from the Site, the genetic.org servers enter the visitor’s IP address into a log.  To maintain visitor anonymity, KS&A does not associate IP addresses with records containing personal information.  However, KS&A reserves the right to use IP addresses to identify any visitors who refuse to comply with KS&A’s in-house rules or terms of service, and to identify visitors who threaten our service, site, members or others.

Cookies

The Site places a small text file called a “cookie” in the browser files of your computer. Cookies are pieces of information that a Web site transfers to an individual’s hard disk for record keeping purposes. Our Site uses cookies during your online session to deliver content specific to your interests. Cookies allow us to avoid showing you the same information, advertisement or other message repeatedly. Our cookies do not contain personal information.  They do enable KS&A to relate your use of the Site to information that you have specifically and knowingly provided to our Site.

Registration

Although some portions of the Site are open to any visitor with or without registration, certain portions of the Site require registration.  Visitors may elect not to participate in these services.  However, if they elect to participate, our Site’s registration system requires visitors to provide contact information such as their name and e-mail address; demographic information such as mailing address, postal code, telephone number, sex, age and the specific condition upon which their interest in KS&A is based; and profile information such as the age when the affected individual was diagnosed, the types of intervention services and/or therapies that he or she has used, their attitude regarding disclosure, etc.  The contact information we collect from visitors by telephone or online who elect to participate in these services may be used to contact the visitor when necessary.  Users may choose (opt-in) to receive future mailings (see the choice/opt-in section below).  The demographic and profile data we collect may be used to tailor the visitor’s experience at our Site, showing the visitor content and possibly advertising that reflects their stated preferences.  This information may also be used to provide or offer to provide KS&A-sponsored services.  Although KS&A may share portions of this information with third-parties on an aggregate basis, it will not indicate the identity of individual users to any third-party without the prior express approval of the registered user.

External Links

In order to provide visitors with greater value, KS&A may provide links to various third-party web sites.  However, KS&A exercises no authority over linked sites (even if a third-party affiliation exists between KS&A and that destination site), each of which third-party web sites maintains independent privacy and data collection policies and procedures.  KS&A assumes no responsibility or liability for these independent methods or actions, and is not responsible for the independent policies or procedures of destination sites.  Similarly, KS&A cannot take responsibility for the privacy initiatives or the content of such third-party Web sites. These destination links are provided only for the convenience of visitors, and as such, you access them at your own risk.  The foregoing notwithstanding, KS&A wishes to ensure the integrity of the Site and its destination links.  Accordingly, any comments pertaining to the Site or any third-party sites accessed through KS&A links provided by our Site are greatly appreciated.

Surveys and Questionnaires

From time-to-time, KS&A may conduct online surveys and questionnaires and may ask visitors for contact, opinion and/or demographic information. This contact information is used to contact the visitor when necessary.  Users may opt-out of receiving future mailings (see the choice/opt-in section below).  Opinion, demographic and profile data is also collected at our Site. This information may be posted on our Site and/or shared with third-parties on an aggregate basis, but in no event will any of the information that is shared indicate the identity of individual users or respondents.

Third-Party Services Advertised on the Site

KS&A may permit certain third-party services to be advertised on the Site including but not limited to solicitations to participate in research studies and clinical trials that we believe may be of interest to our members and visitors, independent and affiliated support groups, and others services.  KS&A will not share personally identifiable visitor information with such third-party advertisers.  However, such services may in certain instances specifically ask you to provide to them personal information.  Such data is not provided to KS&A and is not subject to this policy. These services are, however, bound to KS&A not to collect personally identifiable information from you in any way other than from your voluntary response to a specific request stating the intended use of the information you provide. These third-party services may also place a cookie on your computer for the purposes of ad tracking and presentation.

Security

The Site has security measures in place to protect against the loss, misuse and alteration of the information under our control.  KS&A employs strict security measures to safeguard online transactions; personal information is stored in a secured database and always sent via an encrypted Internet channel; and all volunteers and employees who have access to personally identifiable information have executed an agreement which assures that they will maintain all such information strictly confidential and will not use it for any purpose other than in connection with KS&A business.

Choice/Opt-In

The Site gives users the opportunity to opt-in to receive communications from us and third-parties who we permit to use our website at the point where we request information about the visitor.  This Site also gives users the opportunity to stop receiving these communications at any time.  You will find an opt-out option at the bottom of all communications.

Contacting Us

If you have any questions concerning this privacy statement, the practices of the genetic.org web site or your interaction with the Site or KS&A, contact KS&A in writing by mail or email as follows:

    KS&A Privacy Administrator
    P.O. Box 461047
    Aurora, CO 80046-1047
    (JavaScript must be enabled to view this email address)