Site Privacy Policy

Batten Disease Support and Research Association is committed to safeguarding your privacy while using this site.

Our website is not set up to track, collect or distribute personal information not entered by its visitors.

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. BDSRA uses non-identifying cookies to provide easier site navigation and access to forms. You can still use the BDSRA site if your browser is set up to reject cookies. Our cookies do not generate personal data, do not read personal data from your computer and are never tied to anything that could be used to identify you.

Batten Disease Support and Research Association links to other sites that may be of interest to those who use our site. BDSRA is not responsible for the privacy practices or the content of such Web sites.

BDSRA is firmly committed to the principal of confidentiality of information for its activities and programs. BDSRA staff and volunteers have an ethical and legal obligation to respect the privacy all persons. Furthermore, this obligation extends to protecting and maintaining the confidentiality of all information derived from surveys, studies, databases, or organizational activities.

BDSRA will protect any personal information you may provide. However, BDSRA reserves the right to use aggregate, anonymous data about our users as a group. This data does not contain any personally identifiable information. For instance, we may use information to determine the number individuals having a specific form of Batten Disease, or the number of individuals with Batten Disease in a particular area, etc. This type of survey information is intended to allow a more targeted selection of opportunities for our users.

BDSRA may also disclose information in special cases when we have reason to believe that disclosing this information is necessary to identify, contact or bring legal action against someone who may be causing injury to or interference with our rights or property, other BDSRA users, or anyone else who could be harmed by such actions. BDSRA may also access or disclose information when we believe in good faith that the law requires it and for other administrative purposes necessary to maintaining the site.

Please remember that any personal information which you include in messages posted on bulletin boards, chat rooms or guest book is available to the public and can be collected and used by others. All viewpoints, ideas, proposals, information and other intellectual property posted on BDSRA's bulletin boards, chat rooms or guest book are the property of BDSRA and may be used in the furtherance of the organization's goals and objectives.

If you are under the age of 18, be sure to ask your parent/s for permission before you send any information about yourself to this site or anyone over the Internet. BDSRA recommends as a general matter that parent/s accompany children under age 18 when using content on the Internet and that you carefully review this privacy policy before any personal information about children is provided to this site.

BDSRA reserves the right to amend or alter its site privacy policy at any time without notice by posting such change to this site.

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