Privacy

THE NAA10 FOUNDATION

WEBSITE PRIVACY POLICY

Last Updated: 09/01/2021

Introduction

This online privacy policy (“Policy”) applies to all the NAA10 Foundation (“Foundation,” “we,” or “us”) websites and online resources or digital services (collectively, the “Sites”) that link to this Policy. This notice explains what information we collect about users, how we collect that information, for what purposes we use the information, to whom we may disclose the information, and how users can limit our use of their information. Please be sure to read this entire Privacy Policy before using the Sites.

From time to time we may make changes to this Policy to reflect changes in our legal obligations or the ways in which we process your Personal Data.  When changes are made, we will post the updated Policy here with the effective date of its revision.  We suggest routinely visiting this page to ensure you have reviewed the current Policy.

1. Contact and Policy Updates

You may contact the NAA10 Foundation at PO Box 343, Stafford, Virginia 22554, USA or info@ogdensyndromeus.org

We reserve the right to change or update this Privacy Policy at any time.  When changes are made, we will post the updated policy and the date of the revision, so please re-visit this page occasionally to check for updates.  By continuing to use the websites after the posting of such changes, you accept the policy as modified.

2. What Information Do We Collect and For What Purposes?

Our Sites may collect Personal Data, which is information that either directly identifies you or could reasonably be used in combination with other information to identify you.  Examples of Personal Data that directly identify you include your name, contact information, email address, and other information in combination with such identifiers.  Our websites may also collect Personal Data that does not directly identify you by name or contact information but which may be used to identify that a specific computer or device has accessed our website and could be used to identify you if combined with certain other information.

Personal Data that we may collect includes:

Contact Information. We may collect this information in order to be able to communicate with you. This information may include your name, mailing address, telephone number, email address, job title, age, and other information you provide on our website. It is your choice as to whether to provide this information. Certain areas of our Sites may allow you to submit your Personal Data to us. For example, you may subscribe to an NAA10 Foundation mailing list or newsletter, or register for an event. We may use the information you provide to send you requested information, respond to your inquiry, improve our websites, verify your relationship with the NAA10 Foundation, and take other actions that may be necessary to respond to your request.

Interests and Preferences. This information helps us understand your interest in our mission and materials so that we can better serve our website visitors. This information may include preferences, languages, and demographic data.

Interaction History. This information helps us better understand user engagement with our Sites. This includes how you interact with our Sites, as well as any information you may submit on our Sites. We may collect this information automatically.

Automatically Collected Information.  Our Sites also collect other basic information about you which does not directly identify you but which may correspond with you or a particular device. We use this information to learn more about how our websites and online resources are used and to otherwise improve and administer the Sites. We may collect Personal Data on your visit to our websites through cookies, IP information, or other data provided by your web browser or device, including IP Address, geographic location, resources you have accessed, and similar information. Further information concerning automatic information collection on our Sites can be found below, in the section titled How Does This Site Use Cookies and Other Tracking Technologies

Where permitted by law, we may combine Personal Data you provide with other information you have provided to the NAA10 Foundation through our Sites. Where permitted by law, we may also combine Personal Data collected through our websites and online resources with the NAA10 Foundation’s offline records and information provided to us by third parties. We use this consolidated information to improve our website or online resources.

3. What is Our Legal Basis for the Collection of Personal Data?

We process your information for the specific purposes listed above pursuant to a legal basis, including the following:

  • Compliance with applicable laws or performance of a contract:  In specific circumstances, we may need to process your information to comply with a relevant law/regulation or to fulfill our obligations under a contract with you.
  • Our legitimate interest:  We may process your information based on our legitimate interests in communicating with you and managing our interactions with you regarding our products, services, and education opportunities.  In addition to the other rights you may have described below, you have the right to object to such processing of your information.  You can register your objection by contacting us as described above.
  • Your consent:  In some cases, at the point at which you provide information, we may ask you for your consent to collect and process your information.  If you choose to provide us with your consent, you may later withdraw your consent (or opt-out) by contacting us at the address listed above.  Please note that if you withdraw your consent it will not affect any processing of your information that has already occurred.  Where we process your information based on consent, we will provide more detailed information to you at the time when we obtain your consent.
4. How Does This Site Use Cookies and Other Tracking Technologies?

Cookies. Our websites may use a tracking technology called a “cookie.” A cookie is a small data file that a website can place on your computer’s hard drive, where your internet browser files are kept. Cookies enable us to recognize when a computer being used to browse our websites has previously visited an NAA10 Foundation website or online resource. Cookies can also be used to enable a site to “remember” the information a visitor has previously inputted. Cookies may be placed on your computer both by us and by third parties with whom we have a relationship, such as web analytic services and advertising network services. 

Web Beacons. On certain web pages or in emails we send to you, we may utilize a technology called a “web beacon” (also known as an “action tag” or “clear GIF technology”). We may use web beacons to help determine which email messages sent by us were opened and whether a message was acted upon. Web beacons also help analyze the effectiveness of websites by measuring the number of visitors to a site or how many visitors clicked on key elements of a site.

Social Plugins. This site may use social plugins (e.g., the Facebook “Like” button) to enable you to easily share information with others. When you visit our Sites, the operator of the social plugin may be able to place a cookie on your computer, enabling that operator to recognize individuals who have previously visited our Sites. If you have previously logged into the associated social media website (e.g., Facebook) before browsing on our website, the social plugin allows that social media website to receive information about your visit to particular pages on our website. The social plugin may collect this information for any such visitors who have logged into social networks, whether or not they specifically interact with the plugin on our websites (e.g., by clicking “Like” or “Share”). The social plugin may also allow the social media website to share information about your activities on our Sites with other users of their social media website. For further details about the information shared via a particular social media plugin, you should refer to that social media site’s privacy statement.

Analytics Programs. Analytics programs including Google Analytics may be used to help make our Sites work better and to help us understand what parts of the Sites are being utilized. These analytics programs use technical tools, such as first-party cookies and JavaScript code, to collect information about visitors. Google Analytics tracks visitors to the site who have JavaScript enabled. Google Analytics anonymously tracks how visitors interact with a website, including where they came from and what they did on a site. Google Analytics collects the information set forth above from users. This information is used to administer and update the website, and we will also assess whether the visitors to the site match the expected site demographics and determine how key audiences are navigating the content.

How does our site respond to web browser “Do Not Track” signals?

Certain web browsers and other programs may be used to signal your preferences to the NAA10 Foundation about how or whether the NAA10 Foundation or third parties may collect information about your online activities. Currently, our Sites do not respond to such signals.

What choices do you have about cookies?

Google analytics offers an opt-out provision for website visitors who do not want their data to be collected. You can receive more information about this option here: http://tools.google.com/dlpage/gaoptout

Google and its wholly owned subsidiaries may retain and use, subject to the terms of its Privacy Policy (located at http://www.google.com/privacy.html, or such other URL as Google may provide from time to time), information collected in your use of the Google Analytics Information Disclosures and Sharing.

In addition, most internet browsers allow you to change your browser settings to notify you when you receive a cookie, which lets you choose whether or not to accept it, or to automatically refuse all cookies. Please be aware that some functionality on some of our websites and online resources relies on the use of cookies and may not be available should you choose to refuse all cookies.

5. Does the NAA10 Foundation Disclose Your Personal Data to Third Parties?

We may disclose your Personal Data to third parties who provide us with various business services, including monitoring and maintaining our websites, preparing newsletters and mailings, and meeting planning. We may also share your Personal Data with our affiliates, in compliance with applicable laws.

The NAA10 Foundation may use Personal Data to assist in providing information about clinical studies, provide aggregate disease statistics to third parties, and contribute data to third party journal publications.

In addition, we may disclose your Personal Data to third parties in special cases, including when we have a reason to believe that such disclosure is necessary to identify, contact, or bring a legal action against someone who may be causing injury to or interference with our rights and property or those of any other person. We may also disclose your Personal Data when we believe the law requires it and in any situation that involves threats to any person’s physical safety.

If all or part of the NAA10 Foundation is merged into another entity, the information we have about you may be transferred to a third party as part of that transaction. The acquiring entity will be required to use the Personal Data that is transferred only in a manner that is consistent with this notice. 

6. Will the NAA10 Foundation Transfer Your Personal Data Internationally?

The NAA10 Foundation is based in the United States, and our Sites are operated from the United States. If you are visiting this site from a country other than the United States, your Personal Data will cross an international boundary.

The level of protection for your Personal Data in the United States may not be the same as the level of protection in your country. By using this site, you consent to the collection, storage, and processing of your Personal Data in the United States.

7. Is this Website Intended for Children?

Our websites and online resources are not intended for children. We do not knowingly collect any Personal Data from children under 16 years old. However, if the parent or the guardian of a child under 16 years old believes that the child has provided us with Personal Data, the parent or guardian of that child should contact us at PO Box 343, Stafford, Virginia 22554, USA or info@ogdensyndromeus.org to request deletion of that information. Anyone under 16 years old should seek their parent’s or guardian’s permission prior to using or disclosing any Personal Data to the NAA10 Foundation.

8. What Automated Decisions are Made Using Your Personal Data?

We do not use your Personal Data to make any automated decisions.

9. How Secure Is the Personal Data You Provide?
The NAA10 Foundation takes steps to protect your Personal Data from unauthorized access. However, no internet transmission is ever completely secure or error free. In particular, email sent using this website or another online resource may not be secure. You should take special care before deciding to send us information via email.
10. For How Long Does the NAA10 Foundation Retain Your Personal Data?
All data collected through this website is retained for the duration of your relationship with our organization.
11. Where Links Are Provided on this Website, Does this Notice Apply to the Linked Sites?
This Notice only applies to the NAA10 Foundation websites that link to this Notice. Our websites also may contain links to third-party websites. We do not endorse and are not responsible for the content of third-party websites or resources, and our privacy notice does not apply to any sites that are not affiliated with the NAA10 Foundation, even if you access them via a link on our site. You should review the privacy policies of any third-party site before providing any information.