Privacy and Terms

RareKC respects your privacy and is committed to protecting it through compliance with its  Privacy Policy, located at {link}. This Privacy FAQs summarize our practices for collecting, using, maintaining, protecting and disclosing that information when you visit our website, or otherwise interact with RareKC online or offline (“Services”).  

This Privacy FAQs are provided as an aid to understand how we collect information, how we use the information, with whom we share it, and the choices available regarding our use of the information. To the extent there are any conflicts between these FAQs and our Privacy Policy, our Privacy Policy controls. Please read our full Privacy Policy carefully before using our Services. By accessing and using our Site or our Services, you accept and agree to this Privacy Policy.

What types of personal information do we collect?

You may voluntarily submit your personal information when you choose to provide information through our Services. The types of information we may collect include:

  • Contact information (name, postal address, email address, and phone number);
  • Disease(s) of interest or diagnosis;
  • Your connection to rare disease;
  • Professional information (such as a medical license number); and
  • Content you may provide through our message boards and forms (such as event details and photos).

If we receive or create information which constitutes Protected Health Information (PHI), we will protect this information and treat it confidentially in accordance with the Health Insurance Portability and Accountability Act of 1996 (HIPAA). 

We may collect information about how you use the Services and your preferences by automated means, such as cookies and web beacons. The information we obtain in this manner includes: IP address, browser characteristics, device characteristics, operating system, referring URLs, geographic location, information on actions taken on our Services, and dates and times of website visits.  You may be able to decline certain cookies, but without cookies you may not be able to use all of the features of our website.

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How we use your personal information?

RareKC may use the information we receive to:

  • Process your donations through the help of a third party service provider;
  • Provide and administer information and services to you;
  • Send you information such as new RareKC features, solicit your feedback, or just keep you up-to-date with RareKC and our initiatives;
  • Communicate with you about, and administer your participation in, surveys, events, programs, webinars, newsletters, promotions and other website features. 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 questions, comments, service requests and support needs; 
  • Operate, evaluate and improve our Services; 
  • Perform research and data analyses; we will strive to use anonymized and de-identified data when possible;
  • Comply with our legal obligations and protect our rights, our property, and the rights of third parties;
  • Ensure the technical functionality and security of our Services; and.
  • For other purposes that with your affirmative consent.

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When do we share personal information?

We share your information with our affiliates and business partners to inform you about services and offers that may be of interest to you, unless you have requested that we not share your information with third parties for marketing purposes. We also share your information with our service providers, who are required to treat your personal information in accordance with our Privacy Policy, as required by law and in certain other situations.  

What choices do I have regarding the personal information collected by RareKC?

We provide you choices with respect to how we use and share your information.  Your use of our Services is voluntary.  We offer you certain choices about how your information is collected, used, and shared, from deleting or correcting information you include in your profile and controlling the visibility of your posts to advertising opt-outs and communication controls. 

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. 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

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How do we protect your personal information?

We take reasonable and appropriate measures to protect your information from accidental, unlawful or unauthorized destruction, loss, alteration, access, disclosure or use. However, no method of transmission over the internet, or method of electronic storage, is one hundred percent (100%) secure. Please contact us at if you notice any suspicious activities on our website, or otherwise believe the security of your personal information is compromised due to our Services.  

How do you handle children’s information? 

We do not knowingly collect or solicit personal information from anyone under thirteen (13) years of age or knowingly allow such persons to provide us with their personal information without verifiable parent or guardian consent.  In the event that we become aware that we have collected personal information from any child, we will dispose of that information, or otherwise treat it in accordance with the Children’s Online Privacy Protection Act of 1998 (COPPA) and other applicable laws and regulations.  If you are a parent or guardian and you believe that your child under the age of thirteen (13) has provided us with personal information, please contact us at

How do you update or modify your 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.  When changes are made, we will post an updated Privacy Policy on our website. The changes will apply to all information we have about you.  All changes are effective immediately upon posting.  If you access and use our Site or Services after the date on which the Privacy Policy has changed, RareKC will treat your use as acceptance of the updated Privacy Notice. You are expected to check this page from time to time so you are aware of any changes, as they are binding on you.

How can we reach RareKC? 

RareKC commits to resolve questions and comments about your privacy and our collection and use of your information.  If there are any questions regarding our Privacy Policy, you may contact us at: