Privacy Policy
Last Updated/Effective Date: January 27, 2026
PKD-Free Alliance (“PKD-Free”, “we,” “us,” or “our”) respects your privacy. This Privacy Notice (“Privacy Notice”) describes the processing of Personal Information (defined below) that is provided, collected, or disclosed while providing our services to you (“Services”) and on the sites, applications, social media pages, or other platforms that link to this Privacy Notice (collectively, the “Site”). It also describes your choices about the collection, disclosure, and use of your Personal Information. Please read this Privacy Notice carefully to understand our policies and practices regarding your Personal Information and how we will treat it.
1. Personal Information We Collect
“Personal Information” means information that uniquely identifies, relates to, describes, or is reasonably capable of being associated with or linked to you.
The categories of Personal Information we collect may include:
• Contact Information – When you join the PKD-Free Alliance Community or request additional information from us, we may collect your contact information. This may include your name, email address, phone number, and demographic information.
• Financial Information – If you make any donations through our Site, we (and our third-party vendor) will collect your financial information, including your name and payment information.
• Location Data – While navigating our Site your mobile device or browser may share your location data, both through WiFi and GPS. We will collect this information based on the settings of your phone and browser.
• Usage Information – When you use our Site, our servers may automatically record information, including your Internet Protocol address (IP Address), browser type, referring URLs (e.g., the site you visited before coming to our Site), domain names associated with your internet service provider, information on your interaction with the Site, and other such information regarding your interaction with our Site.
• Employment Information – If you apply for employment, we will collect your employment and work history, as well as other Personal Information related to your potential employment. This may include your education and employment history, address and contact information, demographic information, and any other information included in your resume or application.
• Communication Information – We may collect audio, electronic, or visual information, which includes screen sharing views, Personal Information in any files uploaded, emailed or otherwise provided by customers, Personal Information within the contents of your communications with us, whether via e-mail, text messaging, social media, telephone or otherwise, and inferences we may make from other Personal Information we collect.
• Grant Application Information – If you apply for funding from PKD-Free, we may collect Personal Information necessary to evaluate your application and understand your needs, such as related to IVF treatment, health insurance coverage, and your date of birth.
2. How We Collect Your Personal Information
• We May Collect Your Personal Information Directly From You – For example, if you join our PKD-Free Alliance Community, make a donation through our Site, or request information from us regarding our Services.
• We May Also Collect Personal Information From Third Parties – For example, we may work with business partners, subcontractors, advertising networks, analytics providers, and search information providers, transplant centers, nutritionists, and reproductive specialist who may provide us with Personal Information about you.
• Through Online Tracking Technologies – We use cookies and similar technologies to collect Personal Information automatically as you navigate our Site. For additional information regarding our use of these technologies, see the Cookies and Tracking Technologies section below.
3. How We Use Personal Information
To the extent permitted by applicable law, we may use Personal Information to:
• operate the Site and provide support to our business functions;
• fulfill customer requests, such as to join our PKD-Free Alliance Community, complete donation payments;
• protect against criminal activity, claims and other liabilities;
• send you information about our mission, Services, and events;
• respond to reviews, comments, or other feedback provided to us;
• support and personalize the Site and our advertising efforts;
• protect the security and integrity of the Site;
• provide customer support;
• to the extent required for benchmarking, data analysis, audits, developing new Services, enhancing the Site, facilitating product, software and applications development, improving the Site or our Services, conducting research, analysis, studies or surveys, identifying usage trends, as well as for other analytics purposes;
• meet our contractual requirements;
• comply with applicable legal or regulatory requirements and our policies;
• respond to inquiries related to employment opportunities, and to process job applications, including conducting interviews and background checks;
• market, advertise, and provide the Site and our Services;
• as part of a corporate transaction, such as in connection with the sale of part of all of our assets or businesses, the acquisition of part or all of another business or another business’ assets, or another corporate transaction, including bankruptcy;
• to the extent necessary for any other purpose for which you provide it, including purposes described when you provide the information or give your consent.
4. Disclosure of Personal Information
We may disclose aggregated information about our users, and information that does not identify any individual, without restriction.
We may disclose your Personal Information with your consent or in the following circumstances:
• For Legal or Safety Reasons – We may disclose Personal Information to a third party when we have a good faith belief that access, use, preservation or disclosure of Personal Information is reasonably necessary to (a) satisfy or comply with any requirement of law, regulation, legal process, or enforceable governmental request, (b) enforce or investigate a potential violation of the Terms of Use, (c) detect, prevent, or otherwise respond to fraud, security or technical concerns, (d) support auditing and compliance functions, or (e) protect the rights, property, or safety of PKD-Free, its users, or the public against harm.
• In the Case of a Merger or Sale – We may disclose Personal Information to third parties as necessary, if we are involved in a merger, acquisition, or any form of transfer or sale of some or all of its business, whether as a going concern or as part of bankruptcy, liquidation, or similar proceeding. Where legally required we will give you prior notice and if you have a legal right to do so, an opportunity to object to this transfer.
• To Service providers – When we hire a service provider to help operate the Site or our business, we may disclose Personal Information as necessary to perform the services on our behalf. This may include service providers that we use to support our business, including but not limited to, data analytics providers, website hosting providers, and other technology providers. If you are applying for a job with us, this may include service providers such as background check providers and human resource providers.
• To Business Partners – We may disclose Personal Information with our trusted business partners. For example, we may disclose your Personal Information with a company when we co-sponsor an event or service. These partners and affiliates may use your Personal Information to, among other things, send you information or contact you about their services and products.
• Ad Tech Companies and Other Providers – We may share or make available limited Personal Information (such as mobile device identifiers) with ad tech companies and other online service providers. When we share your Personal Information in this context, we follow applicable legal requirements.
• Other – We may disclose Personal Information to third parties when explicitly requested by or consented to by you, or for the purposes for which you disclosed the Personal Information to us as indicated at the time and point of the disclosure (or as was obvious at the time and point of the disclosure).
If you are applying for employment with us, we also use Personal Information to process your job application, to verify the information you have provided in your application, conduct interviews, perform background and reference checks, to communicate with you and answer your questions, to confirm your eligibility for employment, and improve our recruiting processes. We may also save your Personal Information for future employment opportunities with us.
5. Cookies and Other Tracking Technologies
We and our service providers may use cookies and similar technologies to collect usage and browser information about how you use our Site. The technologies we use for this automatic data collection may include cookies and web beacons that permit us to verify system and server integrity and generate statistics around the popularity of certain content. We process the information collected through such technologies, which may include or be combined with Personal Information, to help operate certain features of our Site, to enhance your experience through personalization, and to help us better understand the features of our Site that you and other users are most interested in.
Website Analytics – We use analytics and session replay services, that use cookies and other technologies that collect your Personal Information, to assist us with analyzing our Site traffic and site usage to optimize, maintain, and secure our Site and inform subsequent business decisions (including, e.g., advertising). These include, but are not limited to, Google Analytics. To learn more about how Google uses data, visit Google’s Privacy Policy and Google’s page on “How Google uses data from sites or apps that use our services.” You may download the Google Analytics Opt-out Browser Add-on for each web browser you use, but this does not prevent the use of other analytics tools. To learn more about Google Analytics cookies, visit Google Analytics Cookie Usage on Websites.
Interest-Based Advertising – We may also allow or enable third parties to collect Personal Information to provide their interest-based advertising on behalf of our products and services, or their own. Interest-based advertising occurs when advertisements are shown to you based on information collected from your online interactions over time and across multiple websites, devices, or online services that you visit or use. Some companies may engage in cross-context behavioral advertising to predict your preferences and show you advertisements that are most likely to be of interest or relevant to you.
We do not control these third parties’ collection or use of your information for these purposes, or the opt-out options they may individually offer you via their terms, conditions, and privacy policies. If you have any questions about an advertisement or other targeted content, you should contact the responsible provider directly. Examples of the third-party service providers we engage to serve interest-based advertisements include Google Ads.
Cookie Choices – To manage your preferences with respect to these technologies, you can:
Change your cookie preferences by customizing your browser settings to refuse all or some browser cookies, or to alert you when websites set or access cookies. If you disable certain cookies, please note that some parts of our Site may not function properly. These settings may be lost and require reconfiguration if you delete your cookies.
Block the collection and use of your information by online platforms and ad tech companies for the purpose of serving interest-based advertising by visiting the opt out pages of the self-regulatory programs of which those companies are members: National Advertising Initiative and Digital Advertising Alliance. Please note that even if you opt out of interest-based advertising, you may still see “contextual” ads which are based on the context of what you are looking at on the websites and pages you visit.
Review and execute any provider-specific instructions to customize your preferences or opt-out of certain processing, including interest-based advertising, by third-party service providers. For example, to opt-out of this type of advertising by Google, customize your ad preferences, or limit Google’s collection or use of your data, visit Google’s Safety Center and Google’s Ad Settings and follow Google’s personalized ad opt-out instructions.
6. How Long Do We Keep Your Personal Information
We will retain your Personal Information for as long as necessary (i) to conduct business with you; (ii) fulfill the purposes outlined in this Privacy Notice; and (iii) to comply with our legal obligations, resolve disputes, and enforce any agreements. Criteria we will use to determine how long to retain your Personal Information include the nature and length of our business relationship with you; our legal rights, obligations, and retention requirements; and if we have an ongoing business purpose for retaining your Personal Information.
7. How We Protect Your Personal Information
We use our commercially reasonable efforts to protect the confidentiality and security of Personal Information we process. However, despite these efforts to store Personal Information in a secure operating environment, we cannot guarantee the security of Personal Information during its transmission or its storage on our systems. 8. Your Choices and Controls
Depending on where you live, you may have the right to exercise certain controls and choices regarding our collection, use, and disclosure of your Personal Information. If you believe you may the right to exercise certain controls and choices, please submit a request to privacy@pkdfree.org. Please note that we may need to verify your identity before considering a request and that we may deny certain requests, or only fulfill some in part, as permitted or required by law.
To opt-out of marketing communications please email us at privacy@pkdfree.org or by following the instructions included in the email or text message correspondence. Please note that, even if you unsubscribe from certain correspondence, we may still need to contact you with important transactional or administrative information, as permitted by law. Additionally, if you withdraw your consent or object to processing, or if you choose not to provide certain Personal Information, we may be unable to provide some or all of our services to you.
9. International Use of the Site
This Site is hosted in the United States. If you are visiting this Site from outside of the United States, please note that by providing your Personal Information it is being transferred to, stored, collected, or processed in the United States, where our data center and servers are located and operated.
10. Children’s Privacy
We do not knowingly collect or solicit any Personal Information from children, as defined under applicable law, without verified written parental consent, and we have no actual knowledge of selling such Personal Information minors under 16 years of age. In the event that we learn that we have collected Personal Information from a child, we will promptly take steps to delete that Personal Information. If you believe we might have any information from or about a child, please contact us at privacy@pkdfree.org.
11. Links to Third-Party Websites
We are not responsible for the practices employed by any websites or services linked to or from the Site, including the information or content contained within them. We encourage you to investigate and ask questions before disclosing Personal Information to third parties, since any Personal Information disclosed will be subject to the applicable third party’s Privacy Notice.
In some cases, we offer links to social media platforms (like Facebook, Instagram, LinkedIn, X (formerly known as Twitter), TikTok, and YouTube) that enable you to easily connect with us or share information on social media. Any content you post via these social media pages is subject to the Terms of Use and Privacy Policies for those platforms.
12. Changes to this Privacy Notice
Please note that we may modify or update this Privacy Notice from time to time, so please review it periodically. We may provide you with an updated Privacy Notice if material changes are made. Unless otherwise indicated, any changes to this Privacy Notice will apply immediately upon posting to the Site.
13. Contact Us
If you have any questions about our practices or this Privacy Notice, please contact us at helpingfamilies@pkdfree.org. You may also write to us at:
PKD Free Babies Alliance, Ltd.
695 Merrick Ave Apt 445
Westbury, NY 11590