Privacy Policy

Early in the disease, there are generally no symptoms at all. In fact, many people are never diagnosed with PKD because they have few or no symptoms. Often the first sign of PKD is high blood pressure, blood in the urine or a feeling of heaviness or pain in the back or abdomen. Sometimes the first sign may be a urinary tract infection or kidney stones.

PKD Foundation has created this privacy policy to explain why we collect particular information and how we will protect your personal privacy within our website. The following discloses our information gathering and dissemination practices for the website located at the URL

In order to fully understand your rights we encourage you to read this privacy policy as well as our terms and conditions. PKD Foundation reserves the right at any time and without notice to change this privacy policy simply by posting such changes on our Site. Any such change will be effective immediately upon posting. Questions regarding this statement should be directed to PKD Foundation by sending an email to Please reference this 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, email 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 our 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 the PKD Foundation by phone 816.931.2600, mail (1001 E 101st Terrace #220, Kansas City, MO 64131) or email ( and asking to be removed from future correspondence.

Credit card information is handled by a secure third party host and used only to process the payment initiated by the person contacting the PKD Foundation. This information is not stored by the PKD Foundation.

The information we collect is not shared with anyone other than companies the PKD Foundation has hired to act on its behalf to raise funds for our organization. The PKD Foundation will not sell, share, or trade your personal information for third party fundraising or marketing purposes. The PKD Foundation does not sell its mailing lists. Additionally, organizations interested in providing educational material to the PKD Foundation membership must provide that material to the PKD Foundation and the PKD Foundation will mail the material on their behalf to ensure relevance to the intended audience and to keep the personal information confidential. Educational material will never be used to solicit funds on behalf of another organization.

An individual using the PKD Foundation 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.

We may disclose “blinded” aggregated data and user statistics to prospective partners and other third parties. Blinded data is data that does not identify an individual person.

The website permits you to use a third party social networking platform such as Facebook, Pinterest, Twitter, and Instagram. This includes use of social media plugins such as Facebook “Like”, Tweet, Pinterest “Pin,” buttons, etc. When you use these social networking platforms and plugins, your username and password for the available service or collected from you on these services may be shared with us. When you use social networking platforms and plugins, you share your information with them and their privacy policy applies disclosure of such information. In addition, they may be able to collect information about you, including your activity or may notify your connections on the social networking platform about your use of the PKD Foundation websites. Such services may allow your activity to be monitored across multiple websites for purposes of delivering more targeted advertising. Please note that their own privacy polices apply and we encourage you to read them. We may add new social networking plugins and buttons to our websites from time to time.


Who collects information

Except as provided in this privacy policy, only PKD Foundation and our affiliates and service providers will have access to your personal account information. When you are on our site and are asked for personal information, you are sharing that information with PKD Foundation and our affiliates and service providers. If personal data is to be collected and/or maintained by any company other than PKD Foundation or its affiliates, we will try to notify you on the website or in an updated version of this privacy policy. If you do not want your data to be shared, you can choose not to allow the transfer by not using that particular service.

Other websites to which we link may collect personally identifiable information about you when you visit those sites. The information practices of other websites linked to our websites are not covered by this privacy policy.


Internet Protocol (IP) 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 websites transfer to the computer that is browsing that website and are used for record-keeping purposes at many websites. 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 website 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 personal and financial information provided to 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 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 websites

Our site contains links to other websites. Please note that when you click on one of these links, you are entering another website for which 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.


Your California privacy rights

California Civil Code Section 1798.83 permits our visitors who are California residents to request certain information regarding our disclosure of personal information to third parties for their direct marketing purposes. To make such a request, please send an email to; or you may contact us via regular mail at:

PKD Foundation
1001 E. 101st Terrace, Suite 220
Kansas City, MO 64131

Make sure to state that you are a California Resident.


Do Not Track

Do Not Track (DNT) is a privacy preference that users can set in their web browsers. While the United States Federal Trade Commission has endorsed DNT, our website does not support DNT codes. However, except in the case of analytics cookies, our website limits tracking to the internal uses described above. Except in the case of analytics cookies, our website does not track your use across multiple websites, however, other websites to which we link may. Please review their privacy policies to understand how you may be tracked.


Contacting the website

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
1001 E. 101st Terrace, Suite 220
Kansas City MO 64131

You can also send an email to:



Important documents