Privacy Policy

KidneyLink has created this Privacy Policy to explain why we collect particular information and how we will protect your personal privacy within our Web site. The following discloses our information gathering and dissemination practices for the Web site located at the URL

In order to fully understand your rights we encourage you to read this Privacy Policy as well as our Terms & Conditions.

KidneyLink is a program of the PKD Foundation to help all people, not just PKD patients, in need of a kidney transplant information better understand the kidney transplant process and options related to the procedure. 

KidneyLink/the PKD Foundation reserves the right at any time and without notice to change this Privacy Policy simply by posting such changes on the KidneyLink Site. Any such change will be effective immediately upon posting.
Because we want to demonstrate our commitment to your privacy, this Privacy Policy notifies you of;

1. What personally identifiable information of yours is collected through the Site; 

2. Who collects such information; 

3. How such information is used; 

4. With whom your information may be shared; 

5. What choices you have regarding collection, use and distribution of your information; 

6. What kind of security procedures are in place to protect the loss, misuse or alteration of information under our control; 

7. How you can correct any inaccuracies in your information.
Questions regarding this statement should be directed to KidneyLink by sending an e-mail to  Please reference KidneyLink Privacy Policy in your subject line.


What Information We Collect and How We Use That Information

Our registration forms require users to give us contact information that may include name, e-mail address, format preference (HTML vs. Text), address, interests, and similar information. We do not request or store sensitive information from our visitors, such as credit card or social security numbers.
The information we collect on the KidneyLink website is used in two primary manners.

For those signing up to donate or become a member, the information is used to create a member profile for which we keep a record of to process correspondence to the member in the future.  This includes communications via the mail, internet or phone call. 

For those simply interested in information the site contains, the minimal information collected is used to inquire as to whether the person providing the information wishes to be contacted by us in the future primarily through email communications.
A person can opt out of these communications at any time by checking the “please remove my name from your email list” option contained in every email or by contacting  KidneyLink/PKD Foundation by phone (816) 931-2600, mail (8330 Ward Parkway, Suite 510, Kansas City MO 64114) or email ( and asking to be removed from future KidneyLink correspondence.
Credit card information is handled by a secure third party host and used only to process the payment initiated by the person contacting KidneyLink. This information is not stored by KidneyLink/the PKD Foundation.
The information we collect is not shared with anyone other than companies KidneyLink/the PKD Foundation has hired to act on its behalf to raise funds for our organization. Additionally, companies interested in providing educational material to KidneyLink/the PKD Foundation membership must provide that material to the KidneyLink and the organization will mail the material on their behalf to ensure relevance to the intended audience and to keep the contact information confidential.
An individual using the KidneyLink website will have access to select parts of the site without having to provide any information. However, some minimal information must be provided to gain access to various parts of our website.  An individual may choose not to provide that information. By not providing that information, however, access may not be possible to various areas on our website.


Internet Protocol Address

We collect an IP address from all visitors to our Site. An IP address is a number that is automatically assigned to your computer when you use the Internet. We use IP addresses to help diagnose problems with our server, administer our Site, analyze trends, track users' movement, gather broad demographic information for aggregate use in order for us to improve the site, and deliver customized, personalized content. IP addresses are not linked to personally identifiable information.


Use of "Cookies"

Our Site may use cookies to enhance your experience while using our Site. Cookies are pieces of information that some Web sites transfer to the computer that is browsing that Web site and are used for record-keeping purposes at many Web sites. Use of cookies makes Web-surfing easier by performing certain functions such as saving your passwords, your personal preferences regarding your use of the particular Web site and to make sure you don't see the same ad repeatedly. Many consider the use of cookies to be an industry standard.
Your browser is probably set to accept cookies. However, if you would prefer not to receive cookies, you can alter the configuration of your browser to refuse cookies. If you choose to have your browser refuse cookies, it is possible that some areas of our Site will not function properly when you view them.



All information provided to KidneyLink/the PKD Foundation is transmitted using SSL (Secure Socket Layer) encryption. SSL is a proven coding system that lets your browser automatically encrypt, or scramble, data before you send it to us. We also protect account information by placing it on a secure portion of our Site that is only accessible by certain qualified employees of the PKD Foundation. Unfortunately, however, no data transmission over the Internet is 100% secure. While we strive to protect your information, we cannot ensure or warrant the security of such information.


Other Web Sites

Our Site contains links to other Web sites. Please note that when you click on one of these links, you are entering another Web site for which KidneyLink/PKD Foundation has no responsibility. We encourage you to read the privacy statements on all such sites as their policies may be different than ours.


Contacting the Web Site

If you have any questions about this Privacy Policy, the practices of this Site, or your dealings with this Site, you can contact:

PKD Foundation
Attn: KidneyLink

8330 Ward Parkway, Suite 510
Kansas City MO 64114
You can also send an e-mail to:



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