Living With XXY, a non-profit 501(c)(3) organization, is changing the way the world views Klinefelter syndrome (47XXY). Focusing on community, awareness, and positive traits. We do this through advocacy and community-building, increasing understanding and acceptance of Klinefelter syndrome/47, XXY. 

This Privacy Policy pertains to; (a) information we collect from persons, either electronically, in-person, via postal mail, or over the phone, in connection with their relationship with Living With XXY, whether it be for a donation or other means (b) all registrants or participants in Living With XXY meetups or any other Living With XXY sponsored event and (c) users of any related services, applications or sites that link to this Privacy Policy (collectively (a), (b) and (c) referred to hereunder as the “Services”).

The Policy describes Living With XXY’ collection and uses for its legitimate interest of users’ Personal Information (e.g., information that identifies a specific person, such as full name, postal address, telephone number, email address, or credit or debit card number) where that information is not otherwise publicly available. It also describes generally Living With XXY’ practices for handling Other Information (e.g., interests, demographics, and site usage) collected from you, through us, or from a third party to the extent that such information is associated with a particular device or user or user account.


Personal Information

“Personal Information” is the information that identifies you as an individual, such as name, postal address, telephone number, email address, and credit or debit card number.

  1. Personal Information You Submit
    1. We collect Personal Information when you submit it to us, including but not limited to when you submit a donation, register for or subscribe to specific events, products, or services, create a profile, participate in an auction, sweepstakes, game or contest, take a survey, use an interactive feature, or participate in a forum.
  2. Personal Information We Receive from Third Parties
    1. We may receive Personal Information about you from third parties, including, for example, information about your transactions, purchase history, or relationships with various product and service providers and your use of specific applications. For example, if you access an Online Service through a third-party connection or log-in, such as Facebook Connect, that third party may pass certain information about your use of its service to us. This information could include but is not limited to the user ID associated with your account, any information you have permitted the third party to share with us, and any information you have made public in connection with that service.

Other Information

“Other Information” is any information that does not reveal your specific identities, such as browser information, information collected through cookies and other technologies, demographic information, and aggregated information. We may combine Other Information with your Personal Information, and when we do, we treat the combined information as Personal Information.

  1. Other Information You Submit: We collect Other Information when you submit it to us. It may include your age, gender, education, occupation, financial information, interests, photos, connections, and comments.
  2. Other Information We Receive from Third Parties: We may receive Other Information about you from third parties, including but not limited to demographic data, information about your interests, and information about your activities on other websites.
  3. Other Information We Automatically Collect When You are Online
    1. Personal Data
      1. Personal data is collected when users provide personal information that is not publically available to Living With XXY, for example, by registering through the Site and donating funds. The personal information you provide must be true, accurate, and complete, and all registration details (where applicable) must contain your real name, address, and other requested details.
      2. Aggregated information, such as information on traffic patterns within the Site, is collected by Living With XXY through various methods:

IP Addresses: We collect IP addresses through the Site. An IP address is a number automatically assigned to your computer whenever you’re surfing the web. Web servers, the computers that “serve up” web pages, automatically identify your computer by its IP address, and when you request a page from the Site, our servers log your IP address. The Site does not link IP addresses to anything personally identifiable, so you will remain anonymous to us although your session will be logged.

Use of Cookies:  Living With XXY may use cookies and other tracking technologies (including browser cookies, pixels, and beacons), which are composed of small bits of data that often include a unique anonymous identifier. A cookie is a small data file that most major websites write to your device for record-keeping purposes when you visit them. Cookies are used by Living With XXY to measure activity on the Site and make improvements and updates based on which areas are popular and which are not. We will make available cookies containing non-personally identifiable information such as IP address and pages viewed regarding your activity on the Site to certain third-party providers with whom we work to show advertisements relating to this Site that may be of interest to you. Most browsers are initially set to accept cookies. If you’d prefer, you can set yours to refuse cookies or to alert you when cookies are being sent. However, it is possible that some parts of the Site will not function properly if you do so.

  1. Children and Privacy
    1. We will not knowingly market to or collect personally identifiable information from children under age 13.

We use the Personal Information we collect from and about you for the purposes set forth below. Please note that we may use and disclose Other Information for any purpose, except where we must do otherwise under applicable law. If we are required to treat Other Information as Personal Information under applicable law, we may use and disclose it for all the purposes we use and disclose Personal Information.

To improve the quality of our services, we may combine the Personal and Other Information we collect with information that you provide to us in connection with us.

To provide and manage our relationship and or services. We use the Personal Information we collect from and about you to provide our products and services and features to you and to improve upon our services, including, without limitation: to process and fulfill your donation, to send you information about your relationship or transactions with us, to measure and improve those services and features, to personalize your experience; to allow you to comment on content, participate in online games, contests, promotions or rewards programs, to provide you with customer support, and to respond to inquiries.

To contact you. Living With XXY may periodically send promotional materials or notifications related to our products and services and or the products and services of third parties to the email or postal address you provided. To help make these promotional materials more relevant to you, we may use and combine any of the Personal and Other Information we collect to assist us in sending you promotional materials. If you want to stop receiving promotional materials from us, please let us know by contacting us as described in the Contact Us. Follow the unsubscribe instructions at the bottom of each email. There are particular service transactional notifications that you may not opt-out of, such as billing and receipt notices and announcements of date, locations, times, and or other changes to any Living With XXY sponsored event to which you are registered. We may also use your email address to respond to inquiries or requests you make to us.


Information Made Public Through Use of Our Services and User Privacy Settings

Certain features on our website or other online services allow you to interact with us and others. These may include forums, message boards, chats, and creating community profiles. When you use these features, you should be aware that any information you submit, including your name, location, and email address, may be publicly available to anyone, including other users, search engines, advertisers, third-party application developers, and anyone else with access to our Online Services. We are not responsible for any information you choose to submit and make public through these interactive features.

Our Disclosure of Information

We also share your Personal and Other Information:

To allow third-party service providers to assist us in providing and managing Our Services. We may make your Personal and Other Information available to certain third-party service providers, such as contractors, agents, or sponsors, who help us manage or provide our products and services by, for example:

  • developing or supporting products and features
  • sending email messages on our behalf
  • processing payments
  • fulfilling orders
  • delivering subscriptions
  • auditing
  • processing data or statistics
  • serving, customizing, or delivering marketing or ads

To permit third parties to send you promotional materials. We may share or trade your Personal and Other Information with other third-party companies, groups, or non-profit organizations to directly market offers to you.

To protect the rights of Living With XXY and our users. There may be instances when Living With XXY may disclose your Personal and Other Information, including situations where we have a good faith belief that such disclosure is necessary to:

  1. protect or defend the legal rights or property of Living With XXY or its affiliates, or their employees, agents, and contractors (including enforcement of our agreements);
  2. protect the safety and security of users of our products and services or members of the public;
  3. protect against fraud or for risk management purposes;
  4. comply with the law or legal process, including rules outside your country of residence; or
  5. To respond to requests from public and government authorities, including public and government authorities outside your country of residence.

To complete a merger or sale of assets. If Living WIth XXY sells all or part of its business or makes a sale or transfer of its assets or is otherwise involved in a merger, or transfer of all or a material part of its business, Living With XXY may transfer your Personal and Other Information to the party or parties involved in the transaction as part of that transaction.


Means of Notice and Choice. This Privacy Policy is the primary means by which we provide you with notice and choice about our collection and use of your Personal Information. If we ask for specific Personal Information that will be used differently from what is described in this Privacy Policy, we will inform you at the time of collection.

Privacy Policy Changes. Living WIth XXY may modify this Privacy Policy as necessary.

Cross-Border Transfer. Your Personal Information may be stored and processed in any country where we have facilities or in which we engage service providers. By using our products and services, you consent to transfer information to countries outside of your country of residence, including the United States, which may have different data protection rules than in your country.

Data Retention. We will retain your Personal Information for the period necessary to fulfill the purposes outlined in this Privacy Policy unless a more extended retention period is required or allowed by law.

Linked Websites. Our Online Services may also be linked to sites operated by third parties and may carry advertisements or offer content, functionality, games, or applications developed and maintained by third parties. Some of these third-party sites may be co-branded with a Living With XXY logo, even though they are not operated or maintained by us. Living With XXY is not responsible for the privacy practices of any such third parties, and once you leave our Online Services via a link, enable a third-party service, or click an advertisement, you should check the applicable privacy policy of the third-party Site.


Living With XXY takes reasonable efforts to secure and protect your personal information’s privacy, accuracy, and reliability and protect it from unauthorized access, misuse, alteration, and loss. Living With XXY implements appropriate security measures consistent with industry standards. As no data security protocol is impenetrable, Living WIth XXY cannot guarantee the security of our systems or databases, nor can we guarantee that personal information we collect about you will not be breached, intercepted, destroyed, accessed, or otherwise disclosed without authorization. Accordingly, any information you transfer to Living With XXY is provided at your own risk.


If you have any further questions regarding this privacy policy or the use of your Personal and Other Information under this privacy policy, you can contact us at [email protected]. Please Label your email with Privacy Policy in the title.  


This Privacy Policy was created in November 2021