RareKC Privacy Policy
Last Updated: July 1, 2020
This Privacy Notice explains how RareKC Foundation, (“RareKC”) handles Personal Information provided to us through our website located at https://rarekc.org/ and related sub-domains (“Website”), third parties, services and products controlled by RareKC, and any other online or offline interaction with RareKC, that link to this Privacy Notice (collectively, “Services”).
As used in this Privacy Policy, “Personal Information” means any information that may be used, either alone or reasonably in combination with other information, to personally identify the specific individual to whom such information pertains. Personal Information includes Financial Information (as defined below).
The types of Personal Information that we may collect for the purposes described in this Privacy Notice are described in this section and include Personal Information that you provide to us, Personal Information that we collect automatically when you use Services, and Personal Information that we collect from third parties.
If we receive or create information which constitutes Protected Health Information (“PHI”) on behalf of your health care provider or your employer sponsored-health plan (both a “Covered Entity”) in our role as a “Business Associate,” we will protect this information and treat it confidentially in accordance with the Health Insurance Portability and Accountability Act of 1996 and its implementing regulations (“HIPAA”) and the Business Associate Agreement contract (“contract”) we have in place with the Covered Entity.
2. Information Collected Automatically
While you are using our Services, we may automatically log your Internet Protocol (“IP”) address, certain other technical information, including your browser type and connection speed, and your activities while using our Services (such as the pages you visited, click rates, time spent on pages, etc.). In order to personalize and enhance your experience, we may also collect information through the following technologies:
In addition to some of the specific uses of information we describe in this Privacy Notice, we may use information we receive to:
The security of Personal Information is important to us. We follow generally accepted industry standards to protect the Personal Information submitted to us, both during transmission and once we receive it. However, no method of transmission over the Internet, or method of electronic storage, is 100% secure. Therefore, while we strive to use commercially reasonable means to protect Personal Information, we cannot guarantee its absolute security.
We will retain your Personal Information for the length of time needed to fulfill the purposes outlined in this Privacy Policy unless a longer retention period is required or permitted by law. We may retain de-identified data for an indefinite amount of time for research and development purposes.
At RareKC, we restrict access to Personal Information to those who require it to develop, support, and deliver services to you. We do not share Personal Information about our users and donors with unaffiliated third parties for use in marketing their products and services. We share Personal Information only with our affiliates, service providers and governmental agencies or as otherwise described below:
We do not knowingly collect or solicit Personal Information from anyone under the age of 13 or knowingly allow such persons to provide us with their Personal Information without verifiable parent or guardian consent. If you have reason to believe that a child under the age of 13 has provided Personal Information to us, please contact us at privacy@rarekc.org, and we will endeavor to delete that information from our databases.
9. Changes to This Privacy Policy
We may periodically update this Privacy Policy to describe new Services features, products or services we offer and how it may affect our use of information about you, as well as if we plan to change the manner in which we collect, use, and disclose Personal Information. If we make material changes to this this Privacy Policy, we will post a notice on the Website prior to the change becoming effective. We encourage you to periodically review this page for the latest information on our privacy practices. We will not make any materially different use or new disclosure of your Personal Information to another entity using your Personal Information for that entity’s own purposes unless we notify you and give you an opportunity to object. Your continued use of the Services after this Privacy Policy has been updated (and after advance notice for a material change) indicates your agreement and acceptance of the updated version of the Privacy Policy. If the updated Privacy Policy is not acceptable to you, your sole recourse is to stop using and accessing the Services. Unless otherwise indicated, any changes to this Privacy Policy will apply immediately upon posting to our website.
If there are any questions regarding this Privacy Policy, you may contact us privacy@rarekc.org.