Privacy Policy

Last updated: 7/17/2015

We believe in protecting the privacy of individuals and making safe and ethical use of personal information that is provided to us via electronic channels.

We respect your privacy and are committed to protecting it through our compliance with this privacy policy (this “Privacy Policy”). For purposes of this Privacy Policy, each of the terms “we,” “us,” or “our” means The International 22q11.2 Foundation, Inc. (the “Foundation”), and the term this “Site,” means, collectively, this website, portions of other Web pages and Web content through which you have accessed this Privacy Policy.

The Foundation offers various services that are accessible to users through this Site, such as, for example, information about 22q11.2 deletion syndrome (also referred to as DiGeorge Syndrome (DGS), Velo-Cardio-Facial Syndrome (VCFS), Conotruncal Anomaly Face Syndrome (CTAF), Opitz G/BBB syndrome, and Cayler Cardiofacial syndrome), and resources relating to the same (collectively “Services”). The Services are available to anyone who accesses the Site.

This Privacy Policy (together with our Terms of Use and any other documents referred to in this Privacy Policy and the Terms of Use) describe information that we collect from users of this Site and through the Services, and how that information may be used and/or disclosed by us.

Please read this Privacy Policy and the Terms of Use carefully to understand our policies and practices regarding your personal information and how we will treat it. By accessing, using or submitting information to this Site and/or Services, you agree to this Privacy Policy and our Terms of Use. This Privacy Policy may change from time to time and your continued use of this Site and/or Services is deemed to be acceptance of such changes, so please check periodically for updates.

Children’s Information

We do not knowingly collect personal information from children under 18, unless we have received consent from a parent or guardian.

If you believe that we might have any information from or about a child, please contact us at In the event that we learn that we have collected personal information from a child under the age of 13, without consent, we will delete that information and otherwise comply with the requirements of the Children’s Online Privacy Protection Act and other applicable laws such as the California Online Privacy Protection Act.

Information We Collect About You

We collect several types of information from and about users of this Site and Services, including the information described below.

Personally Identifiable Information

In this Privacy Policy, “Personally Identifiable Information” means information that identifies a particular individual, including but not limited to an individual’s name, postal address, e-mail address, and phone number.

Although we collect the IP address and information relating to the browsing behavior, through the use of cookies, such as number of visits, pages viewed, time on site, etc., of everyone that visits our Site or uses our Services, we do not collect any other Personally Identifiable Information from users visiting the Site. We do not link IP addresses with any Personally Identifiable Information of users in a manner that identifies a particular individual. Therefore, we treat such information for users as non-personally identifiable information as described further below.

It is possible to purchase items, sign up for events, provide information about your relationship to 22q, and/or become a member of the Foundation through this Site, which may require you to submit Personally Identifiable Information to complete such transactions. Most of the Personally Identifiable Information we collect is voluntarily submitted by you, for example, first and last name, email and postal address, etc. In addition to the Personally Identifiable Information described above, we may also use a third party service to collect and process payment information such as billing address, method of payment – credit card, PayPal, etc. We will also link some of the non-personally identifiable information described further below, with your Personally Identifiable Information. This allows us to better understand the interests, needs, and objectives of our users such that we may better serve you and offer you better Services.

We may occasionally offer additional opportunities for users to communicate with us. If we offer such opportunities, please note that we may collect and link such voluntarily submitted information with your IP address and/or browsing behavior in a way that makes such information Personally Identifiable Information. If you do not want us to collect and/or link such information, please do not participate in such opportunities. The below list of events are examples only and does not constitute the complete list of events that we may provide.

  • Online surveys;
  • Marketing initiatives, including, contests, events, or promotions;
  • Fillable forms or fields;
  • Requesting information about us, this Site, and our Service, whether via email or other electronic means; and

If you use any functionality on this Site and/or Services allowing you to send content to another user, including through the use of social media such as Facebook, twitter, Pinterest, etc., then please be aware that: (a) we may display your email address and/or social media handle (e.g. username) to the other user(s); (b) we may use information you provide about other user(s) to facilitate the communication and/or (c) we may collect the information about you and the other user(s) as otherwise set forth in this Privacy Policy.

We may also collect management information on our email campaigns, such as whether you have read an email sent by us, when and how many times, etc. We will use this information to improve content and Services and to inform groups of users about relevant products and services.

Non-Personally Identifiable Information

We may collect non-personally identifiable information from everyone that accesses the Site and/or Services. We use this information to help make the Site and Services more useful and appealing to you and to better understand our users.

We may collect demographic information about you including but not limited to gender, IP address, zip code, and information regarding your preferences and usage. This type of information is not, by itself, Personally Identifiable Information. However, as stated above, if we link such information with Personally Identifiable Information in a manner that identifies a particular individual, then we will treat all such information as Personally Identifiable Information for purposes of this Privacy Policy.

Some of the information we collect is through the use of marketing and/or web analytic partners such as Google analytics. Such marketing partners may collect information like how often users visit this Site and/or Services, what pages they visit when they do so, what other sites they used prior to coming to this Site and survey responses.

We may collect non-personally identifiable information about you through a variety of technical methods, including the following:

  • Collection of Usage Details and IP Address. As you navigate through this Site and/or Services, we may collect details of your visits to this Site and/or Services, including, but not limited to, traffic data, location data, logs, the resources that you access, and information about your computer and internet connection, including your IP address, operating system and browser type. We may also collect the webpage from which you came immediately before reaching the Site and the webpage to which you went immediately after leaving the Site. We may use this information for system administration and to report aggregate information to our advertisers and business partners.
  • Collection with Cookies. “Cookies” are pieces of information that a website sends to your computer while you are viewing a website. We may place and access cookies on your computer and/or mobile device to track and store preferential information about you. You consent to our placement of cookies on your computer and/or mobile device. Please note that most internet browsers will allow you to stop some cookies from being stored on your computer and/or mobile device and to delete some cookies stored on your computer and/or mobile device. If you choose to do so, however, your use of certain aspects of this Site and/or Services may be restricted.
  • Collection with Web beacons. “Web beacons” are electronic images, tags or scripts that allow a website to access cookies and help track general usage patterns of visitors to a website. Web beacons can recognize certain types of information, such as cookies, time and date of a page view, and a description of the page where the Web beacon is placed. We may use Web beacons to compile information regarding use of this Site and/or Services.
  • Collection with Mobile Device GPS. If you are using a mobile device application to access or use the Site or Services, we may use the GPS of the mobile device to identify your location. Any such identification is used only in connection with the functionality of the Site or Service and will not be otherwise used, except in the aggregate with the location information from other users.

The information collected through these technical methods, standing alone, cannot be used to determine your identity. If such information is combined in a way that makes it become Personally Identifiable Information, we will treat the combined information as Personally Identifiable Information as described above.

Financial Information

We do not collect any financial information on this Site or through the Services. If you make a debit or credit card payment online, you will be taken to a secure payment service provider who will take your payment on our behalf and return you to this Site when your order has been completed. You should not communicate credit card or other payment information via email, as it is not secure.

How We Use Your Information

We may use your non-personally identifiable information to:

  • Understand and anticipate your needs and preferences;
  • Ensure this Site and/or the Services are of interest to you (including, customization of advertising and content) and help us better understand your use of this Site and/or the Services;
  • Conduct internal reviews of this Site and/or the Services and administer this Site’s systems;
  • Develop, enhance, and market our products and services or the products and services of third parties;
  • Provide you with promotional materials, offers, and personalized information; and
  • Manage our business and operations.

In addition to the uses described above, we may use your Personally Identifiable Information to:

  • Confirm and complete transactions requested by you;
  • Provide customer support (including, responding to your requests), troubleshoot and resolve problems and disputes;
  • Contact you to verify the information you provide to us;
  • Protect the security and integrity of this Site and Services;
  • Comply with, monitor compliance with and enforce this Privacy Policy, our Terms of Use and any other applicable agreements and policies;
  • Meet legal and regulatory requirements;
  • Provide administrative communications to you; and
  • For other purposes as may be disclosed when you provide Personally Identifiable Information or in this Privacy Policy.

Sharing of Personally Identifiable Information

Typical Sharing

We do not take your trust in sharing your Personally Identifiable Information with us lightly or for granted. That is why we do not share your information with anyone for direct marketing purposes.

We also strive not to disclose more Personally Identifiable Information than is necessary to complete a transaction, provide a requested service or to operate and improve the Site and/or Services so that they are useful to you. Therefore, we only share your Personally Identifiable Information with third parties we trust, such as our purchasing processor(s), maintenance providers and/or marketing partners. Some of the categories of third parties we may share your Personally Identifiable Information include:

  • A person who, in our reasonable judgment, is authorized to receive your Personally Identifiable Information as your agent, including as a result of your business dealings with that person (for example, your attorney);
  • Our third party vendors so that they may provide support for our internal and business operations, including for the handling of data processing, data storage, surveys, research, internal marketing, delivery of promotional and transaction materials, payment processing, and this Site’s and Services’ maintenance and security;
  • Third parties selected by you when you (i) engage in any activities on this Site and/or Services that are sponsored by them, such as purchasing products or services offered by a third party, electing to receive information or communications from a third party, or electing to participate in contests, sweepstakes, games or other programs sponsored in whole or in part by a third party, and/or (ii) respond to promotional materials from us or our marketing partners. You authorize such third parties to use your Personally Identifiable Information to, for example, send you additional promotional materials, provide you a product or service, or enter you into a sweepstakes. When we disclose your Personally Identifiable Information to these third parties, your Personally Identifiable Information will become permanently subject to the information use and sharing practices of that third party, and the third party will not be restricted by this Privacy Policy with respect to its use and further sharing of your Personally Identifiable Information;
  • Other third parties,:
    • As required by law or ordered by a court, regulatory, or administrative agency;
    • As we deem necessary, in our sole discretion, if we believe that you are violating any applicable law, rule or regulation, or are otherwise interfering with another’s rights or property, including, without limitation, our rights or property;
    • If requested by authorities in the event of any act of terrorism or instance of local, regional or national emergency;
    • To monitor compliance with and enforce our Terms of Use, this Privacy Policy, and any other applicable agreements and policies;
    • To enforce or protect our rights;
    • As part of a Business Transfer, (defined below); and

Aggregation and De-Personalization

We may take your Personally Identifiable Information and make it non-personally identifiable, either by combining it with information about other individuals (aggregating your information with information about other individuals), or by removing characteristics (such as your name) that make the information personally identifiable to you (de-personalizing your information). We may use and/or disclose to third parties such aggregate or de-personalized information in any manner and without notice or compensation to you.

Circumvention of Security Measures

In addition, although we use commercially reasonable physical, managerial and technical security measures and safeguards designed to protect the integrity and security of the Personally Identifiable Information we collect through this Site and Services, we cannot ensure that your Personally Identifiable Information will only be disclosed as described in this Privacy Policy. By way of example (without limiting the foregoing), we may be forced to disclose Personally Identifiable Information to the government or third parties under certain circumstances or third parties may unlawfully intercept or access transmissions or private communications. Therefore, notwithstanding anything to the contrary within this Privacy Policy, the Terms of Use or any other applicable agreement or policy, your use of this Site and/or Services is at your own risk and we do not promise or guarantee, and you should not expect, that your Personally Identifiable Information will always remain private. In the unlikely event that an unauthorized third party compromises our security measures, we will not be responsible for any damages directly or indirectly caused by an unauthorized third party’s ability to view, use or disseminate such information.

Business Transfers

We specifically and expressly reserve the right to disclose, lease, sell, assign or transfer your Personally Identifiable Information collected through this Site and Services and any databases, to third parties in connection with a Business Transfer. A “Business Transfer” means a sale, acquisition, merger, consolidation, reorganization, bankruptcy or other corporate change involving us and/or our affiliates, even if the Business Transfer is only being contemplated and regardless of whether the Business Transfer relates to a part or a whole of our foundation. Nothing in this Privacy Policy is intended to interfere with our ability to transfer all or part of our foundation, equity, and/or assets (including this Site and/or Services) to an affiliate or independent third party at any time, for any purpose, without any limitation, without notice, and without any compensation to you, whatsoever.

Data Retention & Removal

Upon request, we will work with you to remove select information we have collected about you. You may make such a request by sending an email to []. However, please note that we may disassociate posted content and information from you in lieu of removing the same. Further, not all information can be deleted such as information which has been aggregated or is archived. We may also retain select information to prevent, investigate or identify any wrongdoing in connection with the Site and/or Services or to satisfy other legal obligations.

Do Not Track Requests

This Site does not respond to “do not track” requests. All traffic is treated equally and processed the same in that we will track users of the Site and/or Services as well as the webpage that the user came from before reaching the Site and the webpage to which he or she went after leaving the Site. If you desire to have your browsing be private, we suggest that you use your web browser’s private, incognito or other options.

User Generated Content

You are responsible for any content, including personal information that you contribute on this Site or through the Services (“User Generated Content”). For example, User Generated Content may include comments and other activities. User Generated Content posted on this Site or through the Services is at your own risk. We cannot control the actions of other users of this Site which may have access to your User Generated Content. We are also not responsible for circumvention of any privacy settings or security measures contained on this Site and/or Services. As a result, we cannot and do not guarantee that your User Generated Content will not be viewed by unauthorized persons. You understand and acknowledge that, even after removal or disassociation, copies of your User Generated Content may remain viewable in cached and archived pages, or might have been copied or stored by other users of the Site and/or Services. Proper access and use of information provided on this Site and/or Services, including User Generated Content, is governed by our Terms of Use.

Choices About How We Use and Disclose Your Information

We strive to provide you with choices regarding the personal information you provide to us. Below are some mechanisms that provide you with control over certain information:

  • Cookies. If you do not wish us to collect cookies, you may set your browser to refuse some cookies, or to alert you when cookies are being sent. If you do so, please note that some parts of this Site and/or Services may then be inaccessible or may not function properly.
  • Email Offers from Us. If you do not wish to receive email offers or newsletters from us, you can opt-out of receiving email information from us (other than emails related to the completion of your registration, correction of user data, change of password and other similar communications essential to your transactions on this Site and/or Services) by using the unsubscribe process at the bottom of the email or by emailing us at with “unsubscribe” in the subject line.
  • Marketing Third-Parties. If you do not wish to have your Personally Identifiable Information with third parties solely for marketing purposes, emailing us at with “do not share” in the subject line.
  • Accessing and Correcting Personal Information. For users who wish to review the information we have collected about you or someone for which you are the legal guardian, please email us at Please note that we may need to solicit select Personally Identifiable Information in order to authenticate that you are the user about which the information is requested or the legal guardian.

You may be presented with an opportunity to receive information and/or marketing offers from third parties in connection with this Site and/or the Services. All information you disclose to such third parties will be subject to the privacy policies and practices of such third parties. We are not responsible for the privacy policies and practices of such third parties and, therefore, you should review the privacy policies and practices of such third parties prior to disclosing information to them. If you later decide that you no longer want to receive communications from a third party, you will need to contact that third party directly.

Links to Third-Party Websites

This Site and the Services, as well as the e-mail messages sent with respect to this Site and the Services, may contain links to websites operated by third parties that are beyond our control. Links to third parties from this Site and the Services are not an endorsement by us of such third parties, their websites, their products, their services, or their practices. We are not responsible for the privacy policy, terms and conditions, practices or the content of such third parties or third-party websites. These third-party websites may send their own cookies to you and independently collect data. If you visit a website that is linked from this Site, the Services, or our emails, we encourage you to read any privacy statements and terms and conditions of that third party’s website before providing any Personally Identifiable Information. If you have a question about the terms and conditions, privacy policy, practices or contents of a third party or a third party website, please contact the third party directly.

Operation of this Site in the United States

This Site is operated in the United States. If you are located in the European Union, Canada or elsewhere outside of the United States, please be aware that any information you provide to us will be transferred to the United States. By using this Site or providing us with your information, you consent to this transfer and to the applicable laws of the United States.

Changes to this Privacy Policy

We may amend this Privacy Policy at any time in order to provide you with the most up-to-date and accurate information about our collection of data. Amendments will take effect immediately upon us posting the updated Privacy Policy on this Site. Your use of the Site and/or Services after the posting of an updated Privacy Policy constitutes your acceptance and agreement to be bound by the updated Privacy Policy. We may, but do not obligate ourselves, to notify Account holders of any such changes or updates. However, we recommend that everyone, especially users, revisit this Privacy Policy from time to time in order to review any changes that have been made. The date on which this Privacy Policy was last updated will be noted immediately above this Privacy Policy.

Contacting Us

If you have questions or concerns about our privacy practices or wish to make a request regarding your Personally Identifiable Information or the Personally Identifiable Information of someone for which you are the legal guardian, please contact us at any of the following:

  • Via telephone: (877) 739-1849
  • Via mail: The International 22q11.2 Foundation, Inc.

PO Box 532

Matawan, NJ 07747

  • Via email:


Individuals who are residents of California and have provided their Personally Identifiable Information to us may request information regarding our disclosures, if any, of their Personally Identifiable Information to third parties for direct marketing purposes. Such requests must be submitted to us at or in writing at:


  • Via mail: The International 22q11.2 Foundation, Inc.

PO Box 532

Matawan, NJ 07747

Via email:

California privacy rights requests must include the reference “Request for California Privacy Information” on the subject line and in the body of the message and must include the e-mail address or mailing address, as applicable, for us to send our response. This request may be made no more than once per calendar year. We reserve the right not to respond to requests submitted other than to the address specified in this paragraph.


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At the International 22q11.2 Foundation we help families that need important resources and information to meet the needs of loved ones with 22q.