Privacy Policy

The PKD Foundation is committed to safeguarding your privacy on our website located at https://pkdcure.org. We use this privacy policy to clearly disclose to you our privacy practices in a manner that is easy to understand. If there is something you do not understand about our privacy practices, please feel free to contact us at pkdcure@pkdcure.org.

We may change this policy from time to time so please check back often. If we significantly change our collection, use, or disclosure practices, we will try to send you a notice via email if you have provided us with an email address.

What information do we collect from you?

We collect information in several ways. Some of the information we collect is personal to you such as information related to your donations or membership. Other information is anonymous. We collect information in contact-us forms and information concerning your website activity.

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  • When you ask us to contact you, we ask for your name and email address.
  • When you report a problem with our site or services we will collect contact information along with a description of your problem.
  • When you contact us via the PKD email address, we will collect your contact information and any information you include in your email.
  • When you donate, we collect your donation amount, your name, email address, phone number and company.
  • When you purchase products at the online PKD Store, we collect contact information and payment information.
  • When you engage in fundraising activities, we ask you to create a PKD Foundation account through our third party service provider Classy.  We ask for your email address and password, your first and last name and your fundraising goal. We also collect your photo should you choose to add one.
  • When you visit and navigate our site, use our applications or third party sites, or open our emails, we may collect technical information about your use of our site including IP address, device identifier, and viewing information.
  • When you donate or set up a recurring donation, our third party fundraising platform service called Classy uses a payment service called Stripe to collect payment information such as credit card number.  This information is not collected or stored directly by PKD Foundation.
  • If you are a volunteer, we collect your contact information.

How do we collect information from you?

We collect information directly from you when you provide it to us through our website. We collect information indirectly through cookies and other tracking tools.
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Direct Collection: This includes information such as registration information, donation information, volunteer information, contact information, and user submissions. If you do not want to share your information, you can choose not to participate in a particular service or activity. We collect much of the information listed above directly from you when you submit it on our website.

Fundraising Platform. Our third party fundraising platform service, Classy collects information when you register for a Classy account to participate in PKD Foundation fundraising efforts. Classy, also permits users to login to Classy using their Facebook account. In that case, Classy requests permission from Facebook to (i) access your basic information, which includes your name, profile picture, networks, Facebook user ID, list of friends and any other information that you have made public on Facebook; and (ii) manage your participation in fundraising campaigns. For more information about Classy’ s privacy practices, see their privacy policy at https://www.classy.org/terms/privacy/. Please note that while the PKD Foundation is the controller of your personal information relating to our fundraising efforts, Classy also permits users to use their Classy account to participate in other unrelated fundraising efforts.

Indirect Collection: As part of offering and providing customizable and personalized services, many websites use cookies and other online tracking technologies to store and sometimes track information about you.

Cookies. A cookie is a small amount of data that is sent to your browser from a Web server and stored on your computer’s hard drive. Cookies enable us to identify your browser as a unique user. Cookies may involve the transmission of information from us to you and from you to us. Cookies may also be used by another party on our behalf to transfer information to us in accordance with their privacy policy. Some cookies are “persistent cookies.” They are used by us each time you access our website. Other cookies are called “session cookies.” Session cookies are used only during a specific browsing session. We may use a session cookie, for example, to remember that you have already navigated through a particular menu, or that you have entered in password information for a portion of the website that is password protected. We may also use “analytics cookies” that allow web analytics services to recognize your browser or device and, for example, identify whether you have visited our website before, what you have previously viewed or clicked on, and how you found us. This information is provided anonymously for statistical analysis only. Analytics cookies are usually persistent cookies. We use Google Analytics for traffic reporting.

Log Files. Like most standard website servers, we use log files. Log files track Internet protocol (IP) addresses, browser type, Internet service provider (ISP), referring/exit pages, platform type, date/time stamp, and number of clicks. We utilize this information to analyze trends, administer the site, prevent fraud, track website navigation in the aggregate, and gather broad demographic information for aggregate use.

How do we use your information?

Our main goal in collecting information is to raise funds to help in the fight for treatments and a cure for PKD. We also use your information to improve the website and provide you with the best possible experience on the website.
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For example, by using the information we collect, we can get back to you with information on Polycystic Kidney Disease, our fundraising efforts, and how you can donate to these efforts.

We will also use your personal information to:

  • Notify you of donation and fundraising opportunities supporting the fight for treatments and a cure for PKD
  • Enable you to participate in online donations, fundraising efforts and PKD events.
  • Personalize online content so that is applies to you and your interests
  • Make our fundraising efforts and website better
  • To process payments for and shipment of items you purchase in the PKD Store.
  • Compile, analyze and do research on our users’ demographics and behavior
  • Detect, investigate and prevent activities that may violate our policies or be illegal
  • Provide you with personalized content based on your use of our site
  • Enable you to more easily use our website by remembering and using contact information, purchasing information, and registration information
  • Evaluate, monitor and analyze the use of our website and its traffic patterns to help improve our website and services.

Our third party fundraising platform service, Classy, also permits users to login to Classy using their Facebook account. In that case, Classy requests permission from Facebook to (i) access your basic information, which includes your name, profile picture, networks, Facebook user ID, list of friends and any other information that you have made public on Facebook; and (ii) manage your participation in fundraising campaigns.

Who is collecting information?
Except as provided in this Privacy Policy, only PKD Foundation and our service providers will have access to your personal account information and be able to collect information.
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When you are on our site and are asked for personal information, you are sharing that information with the PKD Foundation and our service providers. If personal data is to be collected and/or maintained by any organization other than PKD Foundation or its service providers, 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. 

When you sign-up for an account to donate to PKD, participate in fundraising efforts or participate in a PKD event, you sharing your information with our online fundraising platform for non-profits. For more information about how Classy handles personal information, see their privacy policy available at https://www.classy.org/terms/privacy/.

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.

With whom does PKD Foundation share my information?

We will not disclose any of your personally identifiable information except when we have your permission, when required by law, for security and compliance, to service providers working on our behalf, or if we sell our company or assets. We may also disclose information to third party partners in blinded or aggregated form that does not identify individuals.

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These are some of the ways that your information may be disclosed:

Service Providers
We occasionally hire other companies to provide limited services on our behalf, including mailing, website development and operation, answering customer questions about products or services, sending postal mail or email, analyzing website use, processing payments, providing investor information and processing data. We will only provide those companies the information they need to deliver the service, and they are contractually prohibited from using that information for any other reason.

We use Classy as our third party fundraising platform. Classy provides services for fundraising, event ticketing and direct donations. Contact information collected from Classy is stored in our Salesforce database to help us manage your relationship with the PKD Foundation and gifts you give to support our cause.

We use Stripe to process payments as collected through Classy.

We store contact information about volunteers in Financial Edge cloud service for non-profits.

We use Mid-America Merchandising Incorporated to process our PKD Store payments and shipments.

We use Sales Force for data management, reporting, and mass marketing. Sales Force manages our donor database.

Our analytics providers include Pardot, Lucky Orange, Google Analytics, Facebook Domain Insights, Google Conversion Tracking, and the Google Global Site Tag.

We may provide personal information to our strategic consultant, Cura Strategies, Phone 2 Action for donor research services, and our third party advertisers, Newport One, Manifest, Facebook and Google.

Data in the Aggregate
We may disclose “blinded” aggregated data and user statistics and blinded and aggregated versions of the Client Data to prospective partners and other third parties. Blinded data is data that does not identify an individual person.

Other
We also may disclose your information in special cases. For example, when we believe that we must disclose information to identify, contact or bring legal action against someone who may be violating our Terms of Use, or may be causing injury to or interference with our rights or property, other website users or customers, or anyone else who may be harmed by such activities. We may disclose or access account information when we believe in good faith that the law requires it and for administrative and other purposes that we deem necessary to maintain, service, and improve our products and services.

In the event of a transaction involving a restructuring of PKD Foundation, customer and site visitor information may be one of the transferred assets and may be disclosed in connection with negotiations relating to a proposed transaction. In such case, the transferred information may become subject to a different privacy policy.

How can I control my personal information?

To make a request to view, edit or delete your personal information, contact us at us at pkdcure@pkdcure.org. You may also disable some collection through your browser settings or Google’s opt-out tool.

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We offer our customers choices for the collection, use and sharing of personal information. You may contact us at pkdcure@pkdcure.org. if you wish to view, edit, or delete your personal information from our database, and we will use commercially reasonable efforts to accommodate your request.

If you believe that any inaccurate or inappropriate information has been obtained or provided to others through your use of this website, you should contact us at pkdcure@pkdcure.org.

You may disable browser cookies in your browser or set your browser to warn you when a cookie is being sent. You may lose some features or functionality when you disable cookies. Remember, also, that disabling cookies is browser specific. If you log on using Google Chrome, you must also disable cookies in Safari if you use that browser at a different time.  You may opt-out of Google Analytics collection by downloading the browser plugin “Google Analytics Opt-out Browser Add-on” here

To ensure that you will not receive recurring marketing or other information from us unless you choose to, we will provide you with simple instructions on each marketing email from the PKD Foundation for you to let us know that you have chosen to stop receiving such emails from us.

What security precautions are in place to protect against the loss, misuse, or alteration of my information?

We use encryption in designated areas of our website. We use commercially reasonable efforts to protect your information when it is in our system.

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Because information sent through the Internet travels from computer to computer throughout the world, when you give us information, that information may be sent electronically to servers outside of the country where you originally entered the information. Unfortunately, no data transmission over the Internet can be guaranteed to be 100% secure. Except as specifically stated, this site does not use security encryption measures. We use Transport Layer Security (TLS) encryption to secure certain areas of our website, such as the Contact Us page.  You will know that a webpage uses TLS security when you see “https” or the padlock symbol in your browser URL.   Information that you disclose by use of our website (as with any website that is non-secure), by posting a message or using e-mail, potentially could be collected and used by others. This may result in unsolicited messages from third parties or use of such information by third parties for their own purposes, legal or illegal. As a result, while we strive to protect your personal information, we cannot ensure or warrant the security of any information you transmit to us or from our services, and you do so at your own risk. Once we receive your transmission, we use commercially reasonable efforts to ensure its security on our systems.

What else should I know about my privacy?

Please keep in mind that whenever you voluntarily disclose information online, that information may be accessible to other customers and users. Ultimately, you are solely responsible for maintaining the secrecy of your passwords and/or any account information. Please be careful and responsible whenever you are online.

When you or we end your donor, fundraiser or volunteer relationship with us, we will treat the information we have about you as if you were still our donor, fundraiser or volunteer.

Your California Privacy Rights

California residents are entitled to additional protections under California Law including the right to request information about third parties to whom we disclose information for marketing purposes. 

California Shine the Light Law

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 or written request at the address below.

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.

California Consumer Privacy Act

Under the CCPA, you have the right to know what information is being collected and how it is being sold or disclosed, the right to say no to sales of your information, the right to access and delete your information and the right to equal service and price based on your privacy choices.

We collect use, share and retain your information as described above.  The information we collect is not subject to the CCPA because the PKD Foundation is a non-profit organization.   However, we do try to voluntarily adhere to your privacy rights under the CCPA. To make a request, contact us at pkdcure@pkdcure.org

This Privacy Notice for California Residents supplements the information contained in above in our general privacy policy and applies solely to visitors, users, and others who reside in the State of California.

Your Rights

The California Consumer Privacy Act (“CCPA”) grants State of California residents the following rights, to:

  • Know what personal information is being collected about them;
  • Know whether their personal information is sold or disclosed and to whom;
  • Say no to the sale of their personal information;
  • Access their personal information;
  • Have their personal information deleted; and
  • Have the right to equal service and price, even if they exercise their privacy rights under this law.

Categories of Personal Information We Collect

We collect, or may collect, information that identifies you, your household or your device or is reasonably capable of being connected with or linked to you, your household, or your device (“Personal Information”).

Personal information does not include public information available from government records, de-identified or aggregated information or information that is protected by certain laws such as HIPAA for health related information and the Gramm-Leach Bliley Act (GLBA) for certain financial information. 

We collect identifiers, personal information listed in the California Consumer Records Statute, and Internet or Other Network Activity Information.  We collect this information from you as described above.

Categories of Sources of Personal Information

We collect information from the following categories of sources:

  • Directly from you. For example, when you submit information on our Website, make a donation, fundraise or volunteer.
  • From Third Parties. We do not currently collect information from third parties online but may in the future if we add features. 

How We Retain and Store Your Personal Information

We retain your personal information for as long as necessary to fulfill the purpose(s) for which we collected it and to comply with applicable laws.  We use reasonable security precautions to protect your information while in storage.

Your Nevada Privacy Rights

Nevada law (SB 220), permits customers in Nevada to opt-out of the sale of certain kinds of personal information. A sale under Nevada law is the transfer of this personal information to third parties for monetary consideration so these third parties can then re-sell or license the sold information. We do not sell your personal information to third parties as defined in Nevada law.

Special Privacy Provisions for Children Under 13

The PKD Foundation does not directly collect information from children under the age of 13.

Our Website is not intended for use by those under the age of 13. It is directed towards adult donors and fundraisers. If you are under the age of 13, please do not submit your information on our website.

Who do users contact with questions or concerns about our Privacy Policy?

If you need further assistance, please send an e-mail with your questions or comments to pkdcure@pkdcure.org or write us at:

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

Page last reviewed June 2021