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.
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 (firstname.lastname@example.org) 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.
Who collects information
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”
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.
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 email@example.com; 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
1001 E. 101st Terrace, Suite 220
Kansas City MO 64131
You can also send an email to: firstname.lastname@example.org.