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.
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.
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 firstname.lastname@example.org. 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
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
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.
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.
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;
- Meet legal and regulatory requirements;
- Provide administrative communications to you; and
Sharing of Personally Identifiable Information
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;
- 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 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
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 [email@example.com]. 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
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 firstname.lastname@example.org 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 email@example.com 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 firstname.lastname@example.org. 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
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.
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
SPECIAL NOTIFICATION FOR CALIFORNIA RESIDENTS – YOUR CALIFORNIA PRIVACY RIGHTS
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 email@example.com or in writing at:
- Via mail: The International 22q11.2 Foundation, Inc.
PO Box 532
Matawan, NJ 07747
Via email: firstname.lastname@example.org
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.