Your privacy is a serious matter to the Foundation and we have created this Privacy Notice to inform you of what data we collect and how we collect, use, share/disclose and secure such data. Please take a few minutes to read this Privacy Notice so that you understand how the Foundation treats the information it collects from you when you visit its Sites.
Although this Site contains links to other websites, please be aware that we are not responsible for the privacy practices of those, or any other, sites. If you have questions about how those websites collect and use data, you should carefully read those sites’ privacy policies.
What information do we collect? How do we collect and use such Data?
Personal Information. The Foundation may collect personal information from you when you visit its Sites and provide such information. “Personal information” (also sometimes called personal data) is information that is associated with an individual and enables that individual to be singled out. Personal Information includes such information as your name, mailing address and email. We collect Personal Information from you when you register for our newsletters or when you ask us questions or for more information regarding the Foundation through our
“Contact Us” page. Please follow the unsubscribe instructions provided in the newsletters if you decide at any time that you no longer wish to receive the newsletters from us.
We will keep a record of this Personal Information you provide, including your name and email address and any other personal information you provide, solely for the purposes of responding to your inquiry, providing you with relevant material, such as our newsletter, or for more information about the Foundation. We may disclose this Personal Information to third party marketing automation service providers, such as an email service provider, solely for those purposes; those service providers are not permitted to use this information for any purpose other than providing marketing services to the Foundation.
Employment, Advisory or Volunteer Participation. If you seek employment with the Foundation, or volunteer for the Foundation, we will collect and use information related to your role. For instance, if you volunteer with the Foundation, we may ask about your experience in similar roles, your relationship to Axenfeld-Rieger Syndrome, and/or for any background information needed for the specific volunteer role, such as background checks.
Sensitive Personal Information (Other than Health Information). We ask that you not send or otherwise disclose to us your political opinions, religion or other beliefs, passport or national identity number, criminal background, or trade union membership.
Health Information. You may send us limited health information about you or your family, such as your relationship to Axenfeld-Rieger Syndrome, date of diagnosis, current treatment or medical recommendations. We may post this information to our Sites with your permission.
Financial Information. We, or our vendor, will collect payment information, such as your credit card number, if you donate to the Foundation in order to process your transaction. We may use a third-party payment service to process payments. We will retain your credit card information only for as long as necessary to process the transaction. We may also use certain information (name, address, telephone number or email information, etc.) to verify your identity and/or your
contact information for the purpose of raising money for the Foundation. You have the right to opt-out of receiving such future communications with each communication.
Pseudonymized Data. Personal Information also includes information that does not identify you directly, but that may indirectly identify your device, such as your IP address or mobile device ID (“Pseudonymized Data”). We may collect Pseudonymized Data when you visit our Sites. We store such Pseudonymized Data in server logs, including, but not limited to browser type, IP address, operating system, the date and time of visits, the pages visited on the site, time spent viewing the site, and return visits to the site. We may also use a service provider, such as a website analytics company (e.g., Google Analytics), that records Pseudonymized Data such as browser type, operating system, the date and time of a visit, where visitors came from, the pages visited on this website, the time spent viewing site, where visitors went when they left the site, and return visits to the site. We may aggregate this Pseudonymized Data to better understand how visitors use our site, and to help manage, maintain, and report on use of our website. We may also store IP addresses for fraud detection and prevention purposes. We may share this Pseudonymized Data with third parties for reporting on use of our Site, or to comply with applicable law. We also may share this data with our service providers.
Information Posted to any forums, chats or blogs
If you choose to use a forum, a blog, participate in a chat room or otherwise use a social networking feature available through the Site, you should be aware that any Personal Information or other information you post can be read, collected or used by other users of the Site, and could be used to send you unsolicited messages or used in an otherwise unauthorized manner. We cannot be responsible for any Personal Information you choose to post through those means and we recommend careful consideration before you post such information.
Third Party Content, Links, and Plug-ins
This Site contains links to other websites, content and resources not owned by or affiliated to the Foundation. Please be aware that we are not responsible for the privacy practices of those, or any other, sites. These third-party websites, content and resources may send their own cookies to
visitors, collect data or solicit and use your Personal Information in ways different than set forth in this Privacy Notice. If you have questions about how those websites collect and use data, you should carefully read those sites’ privacy policies. We are not responsible for the privacy practices of the providers of these other websites, content and resources and cannot guarantee the security of any of your Personal Information collected, used or shared there.
The Foundation may use cookie technology as part of Site’s statistical reporting and for other purposes related to making the Site available to you. A cookie is a small piece of information sent by a website that is saved on your hard disk by your computer’s browser. It holds information a website may need to personalize your experience. The Foundation may also utilize cookies to identify if you are logged into a Site account.
A Web beacon is an electronic image, also called a single-pixel or clear GIF, placed in the code of a webpage or in emails. The Sites may use Web beacons to track traffic patterns of users as they navigate from one page to another. This information lets us tune and improve your browsing
experience. As with cookies, the information that Web beacons collect is aggregated, “click stream” data that is not directly identifiable to you as an individual.
We also use Web beacons through a third party website analytics provider, as well as standard Web server log files, to help us count visitors and evaluate the Site’s technical capacity. This information tells us how many people visit the Sites, and helps us decide how to arrange pages in the most user-friendly way. This also helps us keep the Sites’ browser-friendly and more useful to our users.
WITH WHOM MAY THE FOUNDATION SHARE OR DISCLOSE YOUR INFORMATION? The Foundation may disclose your Personal Information it collects to third parties as follows:
● Operation of the Website: We disclose your Personal Information to third parties where necessary to provide the Website and its features and functionality to you. ● At Your Request: We disclose your Personal Information to a third party whenever you request us to do so.
● Business transfers: If a third party acquires all or substantially all of the Foundation’s assets, your Personal Information, aggregated information, and any other information that we have collected in connection with the Site may be transferred to such third party as part of our business assets. Also, if any bankruptcy or reorganization proceeding is brought by or against us, all such information may be considered one of our assets and may be sold or transferred to third parties.
● Disclosure of Personal Information for legal purposes and protection of the Foundation and others: We reserve the right to share your Personal Information with third parties if required to do so by law, or if we believe such action is necessary in order to: (1) conform to the requirements of the law or comply with legal process served upon us; (2) protect or defend our legal rights or property, the Site, or visitors to our Site; or (3) investigate, prevent, or take action regarding illegal activities, suspected fraud or situations involving potential threats to the physical safety of any person.
● Service Providers: We use third-party service providers to perform certain services on our behalf, such as processing, storing, maintaining and transmitting data, processing and fulfilling email and newsletter campaigns, credit card processing, web analytics and data analysis. We may provide your Personal Information to these third-party service providers when the information is necessary for them to perform their duties. These third-party service providers are contractually restricted from using Personal Information
for any other purpose and required to comply with all applicable laws with respect to the Personal Information they receive.
● Government Agencies: We will disclose your Personal Information to third parties if required to do so by law.
● As Otherwise Permitted by Law. We may disclose your Personal Information to third parties as otherwise permitted by applicable law.
● We may share limited your Personal Information, such as contact information, with volunteers who are assisting the Foundation and who require the information as part of their duties.
HOW YOU CAN DECIDE WHAT COMMUNICATIONS YOU’LL RECEIVE FROM THE WEBSITE
If you have requested to receive newsletters or information from the Foundation, you may opt-out of receiving further communications through our Contact Us page. Please make sure to include your email information and allow up to 10 days for us to process your request.
This Site was not developed for, or directed at, children (as defined by applicable law). We do not knowingly collect information directly from children (determined in accordance with the age requirements for the applicable country). If you believe a child has provided us with personal data and you would like to have the information removed, please write to us through our Contact Us page.
Transfer of Data in the Event of Acquisition
In the event that another company acquires all or substantially all of the assets of our business through a consolidation, merger, asset purchase, corporate reorganization, or other transaction, we reserve the right to transfer all information (including any information a user may have provided through our “Contact Us” page on the Site) that is in our possession or under our control to the acquiring party.
We follow generally accepted security standards to protect Personal Information against unauthorized access to, unlawful processing of, unauthorized retention of, and unauthorized disclosure of data. These standards include undertaking necessary physical, electronic, and management activities required to protect data integrity, access, and use. All online donations are processed via third parties using secure servers. The Foundation works only with vendors who are also PCI compliant for handling personally identifiable information and/or financial transactions. More information can be found on the PCI Security and Standards Council website. The Foundation does not store your credit card information for future use.
However, due to the inherent nature of the Internet as an open global communications vehicle, we cannot guarantee that information, during transmission through the Internet or while stored on our system or otherwise in our care, will be absolutely safe from intrusion by others, such as hackers. We will have no liability for disclosure of your Personal Information due to errors or unauthorized acts of third parties during or after transmission. To the extent you establish an account at the Site, you are responsible for maintaining the strict confidentiality of your account password, and you shall be responsible for any access to or use of the Site by you or any person or entity using your password, whether or not such access or use has been authorized by or on behalf of you, and whether or not such person or entity is your employee or agent. You agree to immediately notify the Foundation of any unauthorized use of your password or account or any other breach of security.
PRIVACY NOTICE UPDATES
This Privacy Notice was updated on the “Effective Date” date noted below. The Foundation reserves the right to change, modify, or amend this Privacy Notice from time to time to reflect changes in our privacy practices. You are encouraged to review this Privacy Notice periodically and to check the “Effective Date” at the bottom of this Privacy Notice for the most recent version to inform yourself about how your Personal Information is collected, used and shared when you
use the Sites. To the fullest extent under applicable law, your use of the Sites after the “Effective Date” means you are subject to Privacy Notice then in effect.
If you have any questions or comments regarding our privacy practices, you may contact us via our Contact Us Page.
Effective Date: November 25, 2020.