1. Privacy Statement

 
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The Sickle Cell Association of Kentuckiana is a non-profit (501c3) organization. The Sickle Association of Kentuckiana may only use the information that you provide through this registry for purposes described in this Privacy Statement.
To address privacy concerns you may have while visiting our registry, this Privacy Statement describes how The Sickle Cell Association of Kentuckiana may use information that you provide. If you do not wish The Sickle Cell Association of Kentuckiana to use information that you provide through this Site as described in this Privacy Statement, you should not participate in the registry questioning site.

The Sickle Cell Association of Kentuckiana has developed a TERMS AND CONDITIONS OF USE statement that describes your responsibilities when using this Site. Please refer to this document for additional information.

Please note that this Privacy Statement applies only to how The Sickle Cell Association of Kentuckiana uses individually identifiable personal information that you provide when visiting this Site. "Online personal information" is any information or data you provide through this Site that is individually identifiable, such as a name, address, email address, and birth date. The Sickle Cell Association of Kentuckiana routinely gathers quantitative information on Sickle Cell and how it affects the individuals in Kentucky and Southern Indiana.

When you communicate with us via our Registry, we collect personal information about you only if you provide it to us voluntarily. "Online personal information" may or may not be individually identifiable health information that is also protected by the Privacy Rule. Where online personal information also constitutes individually identifiable health information under the Privacy Rule, the provisions of the Privacy Rule also will govern The Sickle Cell Association of Kentuckiana permitted uses and disclosures of the online personal information.

Portions of our Registry may allow you to provide us with online personal information in order to deliver requested materials, products or services to you (such as a newsletter or educational material).

The Sickle Cell Association of Kentuckiana does not sell, license or disclose online personal information that you provide to us outside of The Sickle Cell Association of Kentuckiana, its contracted agents (e.g., business associates) and affiliated companies.

As permitted by the Privacy Rule, individually identifiable health information that you provide through this Registry or that The Sickle Cell Association of Kentuckiana creates or receives about you may be used or disclosed by The Sickle Cell Association of Kentuckiana in connection with services provided to you by The Sickle Cell Association of Kentuckiana, and for other purposes that are permitted or required by law. Under the Privacy Rule this information is called "protected health information." Protected health information is individually identifiable health information, including demographic information, collected from you or created or received by a health care provider, a health plan, or a health care clearinghouse and relates to: (i) your past, present or future physical or mental health or condition; (ii) the provision of health care to you; or (iii) the past, present or future payment for the provision of health care to you. We refer to protected health information and individually identifiable health information interchangeably in this Privacy Statement.

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