Privacy Policy

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 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). 

  1. Personal Information Collected

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.    

  1. Share Your Rare Journey. You may voluntarily submit your rare disease journey with us, together with your Personal Information including your first and last name, email address, mobile phone number and mailing address (“Contact Information”), relationship to RareKC, and your diagnosed rare condition via web forms located at  By submitting a story, you give us permission to share it on our Website and social media for the purposes of helping others not feel isolated or alone.
  2. Partner With RareKC. You may voluntarily submit Personal Information including your Contact Information and date volunteered via web forms located at
  3. Volunteer With RareKC. You may voluntarily submit Personal Information including your Contact Information to sign up for volunteer opportunities via web forms located at
  4. Contact RareKC. You may voluntarily contact us by submitting Personal Information, such as your Contact Information, your relationship to RareKC, comments via web forms located at Personal Information collected by the “Contact Us” feature is used to contact you to respond to your inquiries, and are not used to add you to our newsletter or another unsolicited marketing message (unless you also otherwise provide us with your Personal Information for those purposes). 
  5. Donate to Us. You may submit certain financial information including your Paypal® account information, credit card or bank account number, expiration date and billing address (“Financial Information”) via our website to donate to our cause.  A third party, Paypal®, collects and processes such Financial Information on behalf of us. If you choose to donate, the collection and processing of your Personal Information is governed by the privacy policy of Paypal®, not by this Privacy Policy.
  6. Mailing List Sign-Up. You may voluntarily submit your Personal Information, including your Contact Information and your relationship to RareKC via web forms located at to receive newsletters, publications and other communications regarding our Services and our products, services, and other offerings. 
  7. Committee Engagement. You may voluntarily submit your Personal Information, including your Contact Information and your relationship to RareKC via web forms located at to join RareKC committee. 
  8. Social Media. The Services may allow you to share content with third-party social networking sites (e.g. Facebook®, Twitter®). If you choose to do this, your interactions with these third parties are governed by the privacy policy of the company providing them, not by this Privacy Policy.
  9. Analytics. We may use certain in-house or third-party functionality to analyze your communications with us and interactions with the Services. The analysis enables us to monitor the Services that we provide so that we can improve our Services. These third parties will be required to protect any Personal Information in a manner consistent with this Privacy Policy. 

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:

  • Log Files. The information inside the log files includes IP addresses, type of browser, Internet Service Provider (“ISP”), date/time stamp, referring/exit pages, clicked pages and any other information your browser may send to us.
  • Web Beacons. Web Beacons are small graphic images or other web programming code that may be included in our Website pages or other areas of the Website. Web Beacons are tiny graphics with a unique identifier, similar in function to cookies, and are used to track the online movements of users of our Website. Unlike cookies, which are typically stored on your computer or mobile device’s hard drive, Web Beacons are embedded invisibly on web pages. Web Beacons or similar technologies help us better manage content on our Website by informing us what content is effective, counting the number of users, monitoring how users navigate the Website, or counting how many emails, articles or links were actually opened or viewed.
  • Cookies. We may collect certain information about users whenever they interact with our Services by using Cookie technology. Cookies are small files that a site or its service provider transfers to your computer’s hard drive through your web browser, if you so allow, that enables the Services or our service provider’s systems to recognize your browser and capture and remember certain information. This technology typically does not personally identify you or extract information from your computer. We may use Cookies to provide an enhanced online experience, to monitor and measure the use of our Services and to improve the Services’ design and content. The type of information collected may include browser information, operating system, type of computer, internet service provider and other similar information. The information we may obtain in this manner also helps us customize the content, services, or products we offer on our Services and to measure their overall effectiveness. You may be able to decline Cookies by changing a setting in your web browser. You may also be able to disable the ability of web beacons to capture information by declining Cookies.
  • Third-Party Cookies. The use of third party Cookies is not covered by our Privacy Policy.  We do not have access or control over these Cookies. You may visit the third party links below to opt out of their tracking and learn about their privacy practices. However, we are not in control of the location of the instructions and information provided by the third parties below and, therefore, you may have to locate the particular instructions and information for the respective third party if these links are no longer current.
  1. How We Use Your Personal Information

In addition to some of the specific uses of information we describe in this Privacy Notice, we may use information we receive to:

  • provide and administer the services, information, content, and products you requested;
  • respond to your questions and comments that you communicate to us or to respond to your request;
  • to send you information such as new RareKC features, solicit your feedback, or just keep you up-to-date with RareKC and our initiatives. You can always opt out of email marketing by clicking on the “Unsubscribe” link appended to the end of a promotional email from us;
  • respond to your service requests and support needs; 
  • remember information so you will not have to re-enter it during your visit or the next time you visit the Services;
  • provide, analyze, administer and improve our Website and Services;
  • perform business analyses or for other similar purposes to improve the quality of our business, our Services and the products we offer;
  • create aggregated, non-personal information, or to create de-identified information; 
  • comply with our legal obligations and protect our rights, our property, and the rights of third parties; and
  • ensure the technical functionality and security of our Services.
  1. Data Security 

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.

  1. Data Retention

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.  

  1. How We Disclose Personal Information and Anonymous Data

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:

  • Service Providers. We may share your Personal Information with affiliated and unaffiliated companies that perform tasks on our behalf related to our organization. Such tasks include managing and analyzing this Website and other Services, printing and mailing services, marketing services, and donation processing services. For example, we employ service providers who help us conduct marketing services on our Website (MailChimp); manage donor relations (Bloomerang); and collect donations (Paypal). Third party service providers receive your Personal Information as necessary to perform their role, and we instruct them not to use your Personal Information for any other purposes.
  • Professional Advisors. We may share your Personal Information with our auditors, lawyers or other professional advisors so they can support our business. Like the other service providers, these professional advisors are bound by contractual obligations to keep Personal Information confidential and use it only for the purposes for which we disclose it to them.
  • As Required or Appropriate by Law. We will disclose your Personal Information as necessary or appropriate, including to providing information as required by law, regulation, subpoena, court order, legal process or government request; to enforce our Terms of Use, including investigations of potential violations thereof; to detect, prevent or otherwise address fraud, security or technical issues; when we believe in good faith that disclosure is necessary to protect your safety or the safety of others; to protect our rights, to investigate fraud, or to respond to a government request.
  • In the Event of Merger, Sale, or Change of Control. We may transfer or assign this Privacy Policy and any Personal Information collected hereunder to a third party entity that acquires or is merged with as part of a merger, acquisition, consolidation, restructuring, the sale of substantially all of our shares and/or assets, in connection with bankruptcy proceedings, reorganization, or other change of control.
  1. Children

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, and we will endeavor to delete that information from our databases.

  1. Your Choices 
    1. We strive to maintain the accuracy of any Personal Information that may be collected from you, and will use our commercially reasonable efforts to respond promptly to update our database when you tell us any such information in our database is not accurate. It is your responsibility to ensure that such information is accurate, complete and up-to-date. You may obtain from us, by email or mail, the information in our records and/or files. If you wish to make any changes to any Personal Information you have provided to us, you may do so at any time by contacting us at
    2. Privacy Questions. You may submit a request to or write to us at the following mailing address. We will promptly review all such requests in accordance with applicable laws.
    3. Commercial Emails.  If at any time you would like to unsubscribe from receiving future commercial emails, please use the unsubscribing method stated in the commercial email, or send us an email at with the subject line UNSUBSCRIBE. We will remove your information from our records immediately.  Please note that your request not to receive future emails from us will not apply to messages that you request or that are not commercial in nature. 
    4. Our Website does not respond to web browser “Do Not Track” signals and similar mechanisms. However, you may control certain tracking mechanisms as described in this Privacy Notice.

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.

  1. Questions Regarding This Privacy Policy

If there are any questions regarding this Privacy Policy, you may contact us