Effective April 8, 2024:
This is the Angioma Alliance d/b/a Alliance to Cure Cavernous Malformation’s (“Alliance to Cure”) website, www.alliancetocure.org (hereinafter, the “Site”). This Privacy Policy is applicable to our Site, as well as to the Alliance to Cure (“we,” “our,” “us”). At Alliance to Cure, we take your right to privacy seriously. This Privacy Policy (“Policy”) describes how Alliance to Cure uses and maintains the personal information you provide us, either through the Site, or when you participate in one of our programs or activities.
By using the Site or providing your personal information to Alliance to Cure, you are agreeing to the terms of this Policy.
Please note that this Policy does not apply to Alliance to Cure’s International Patient Registry, which is operated by Life Data Systems, d/b/a OrdinalData with the approval of the Northstar Investigational Review Board. Our Patient Registry Privacy Policy provides information about how we collect, use, secure, and share your personal information when you access and use the Patient Registry. This Policy also does not apply to the genetic testing we might offer to certain qualified individuals who have registered with our patient registry, nor does it apply to Alliance to Cure’s Biobank, which is a research project that is conducted with the approval of the Northstar Investigational Review Board. Additional privacy information for this project can be found in the Informed Consent document provided to potential participants.
Information We Collect and Maintain About You
Personal information you provide to us
General information.
We collect personal and other information from you directly when you provide it to us through the Site. For example, when you sign up for updates, we collect your name, email address, and zip code. We also collect personal information from you when you communicate with us by email. Finally, we may collect personal information from you when you fill out one of the surveys that we send to you via SurveyMonkey.
Donor information.
We also collect personal information from you when you donate to us. Alliance to Cure is committed to maintaining the confidentiality of our donors’ personal information. When you choose to donate to us online, we collect your name and contact information, billing address, and other information necessary to process an online donation or event registration. Although our service provider will collect your credit card information in order to process your donation, that information is not shared with Alliance to Cure by our service provider and our service provider does not retain your credit card information after your payment is processed. We do not trade or sell a donor’s personal information, collected on the website or through any business activities.
Donors may opt-in to share testimonials with Alliance to Cure, which may be featured on Alliance to Cure’s social media, website, or other publications. Donors who do not choose to remain anonymous may have their names featured in recognition lists with other donors at their associated giving level in Alliance to Cure publications such as the mailed newsletter or annual report.
Health information.
Individuals may also choose to provide us with information about a diagnosis and other health information when they communicate with us. This may include MRI results, patient records, or details about the course of their disease and treatment information. We use this information to respond to your questions. We may use this information in the aggregate to advise academic researchers, commercial treatment developers, and our greater patient community. This data is used to design studies, including clinical trials, and to assist the patient community in making care decisions. We do not share your individual, identified health information with third parties, like our Medical or Scientific Advisors, without your consent.
Personal information we automatically collect.
We also automatically collect certain information about you and your computer, smartphone, or other device when you use, access, or interact with our Site.
Web log data.
When you use the Site, we automatically receive and record certain information from your computer (or other device) and your browser. This may include such data as your IP address and domain name, the pages you visit on the Site, the date and time of your visit, the files that you download, the URLs from the websites you visit before and after navigating to the Site, your software and hardware attributes (including device IDs), your general geographic location (e.g., your city, state, or metropolitan region), and certain cookie information (see below). To obtain such information, we may use web logs or applications that recognize your computer and gather information about its online activity.
Cookies.
We use cookies on the Site. Cookies are small files that are stored on your computer by your web browser. A cookie allows the Site to recognize whether you have visited before and may store user preferences and other information. For example, cookies can be used to collect or store information about your use of the Site during your current session and over time (including the pages you view and the files you download), your computer’s operating system and browser type, your Internet service provider, your domain name and IP address, your general geographic location, the website that you visited before visiting the Site, and the link you used to leave the Site. If you are concerned about having cookies on your computer, you can set your browser to refuse all cookies or to indicate when a cookie is being set, allowing you to decide whether to accept it. You can also delete cookies from your computer. However, if you choose to block or delete cookies, certain features of the Site may not operate correctly.
Web beacons.
The Site or the emails that you receive from Alliance to Cure may use an application known as a “web beacon” (also known as a “clear gif” or “web bug”). A web beacon is an electronic file that usually consists of a single-pixel image. It can be embedded in a web page or in an email to transmit information, which could include personal information. For example, it can allow an email sender to determine whether a user has opened a particular email.
Third-party analytics and engagement. We may partner with certain third parties to collect, analyze, and use the personal and other information described in this section. For example, we may allow third parties to set cookies or use web beacons on the Site or in email communications from us. This information may be used for a variety of purposes, including for analytics and to understand how people engage with our social media channels, as discussed below (see “With Whom and Why We Share Your Information”).
How We Use and Process Your Information
We use the information that we collect for a variety of purposes. Our legal bases for processing your personal information are: 1) our legitimate interest in running and maintaining our business; 2) performance and fulfillment of our contracts; 3) your consent; and 4) compliance with our legal obligations. In many instances, more than one of these legal bases apply to the processing of your personal information.
The purposes for which we use your information include to:
- Provide you with our Site, programs, and activities;
- Fulfill the terms of any agreement with us;
- Respond to your questions or requests or otherwise communicate with you;
- Send you information about the Alliance to Cure and other topics that are likely to be of interest to you, including newsletters, updates, or other communications;
- Process and verify your donations;
- Improve our Site or the Alliance to Cure programs and activities;
- Comply with legal and/or regulatory requirements;
- Aggregate and deidentify information;
- Analyze how visitors use and engage with the Site and our social media channels, including to count and recognize visitors to the Site; and
- Manage our organization.
We may link information gathered through the Site with information that we collect in other contexts. But in that event, we will handle the combined information in a manner consistent with this Policy.
With Whom and Why We Share Your Information
We may share any of the information described above with other parties for a variety of purposes, as described below.
Third-party service providers.
Alliance to Cure uses third-party service providers that perform services on our behalf, including web-hosting companies, mailing vendors, fundraising software companies, and analytics providers. These service providers may collect and/or use your information, including information that identifies you personally, to assist us in achieving the purposes discussed above. For example, our fundraising service provider may verify with third parties the information collected in the course of processing a gift, event registration, or other donation. If you use a credit card, our fundraising service provider may use card authorization and fraud screening services to verify that your card information and address match the information you supplied to us and that the card being used has not been reported lost or stolen.
Analytics.
We partner with certain third parties to obtain the automatically collected information discussed above and to engage in analysis, auditing, research, and reporting. These third parties may use web logs or web beacons, and they may set and access cookies on your computer or other device. In particular, the Site uses Google Analytics to help collect and analyze certain information for the purposes discussed above. You may opt out of the use of cookies by Google Analytics here.
Legal purposes.
We may use or share your information with third parties when we believe, in our sole discretion, that doing so is necessary:
- To comply with applicable law or a court order, subpoena, or other legal process;
- To investigate, prevent, or take action regarding illegal activities, suspected fraud, violations of our terms and conditions, or situations involving threats to our property or the property or physical safety of any person or third party;
- To establish, protect, or exercise our legal rights or defend against legal claims; or
- To facilitate the financing, securitization, insuring, sale, assignment, bankruptcy, or other disposal of all or part of our business or assets.
Aggregated and de-identified information.
From time to time, Alliance to Cure may share aggregated or de-identified information about visitors to the Site or our donors. Such aggregated information will not identify you personally.
Your Privacy Rights
You may opt out of receiving emails from us by following the instructions in those emails or by emailing us at info@alliancetocure.org.
If you are a resident of a jurisdiction with an applicable data privacy law, you may have certain rights available to you in relation to your personal information. These rights may include:
- The right to know what personal information is being collected and for what purpose.
- The right to know what personal health information is being “sold” or “shared”, for what purpose, and the recipients of your personal health information.
- The right to access your Personal Information.
- The right to have your Personal Information rectified, corrected or updated.
- The right to have your Personal Information deleted.
- The right to object to the processing of your Personal Information.
- The right not to be subject to any automated decision making and profiling.
If you would like to access, review, update, correct, and delete any personal information we hold about you, or exercise any other privacy rights available to you, please contact us via email at info@alliancetocure.org. We will review your verifiable privacy rights request (“Privacy Rights Request”) and respond to you as quickly as possible. If we are unable to comply with your request due to an exception or limitation, we will explain this in writing. If we need more time, we will inform you of the reason and extension period in writing.
If you would like an authorized agent to make a Privacy Rights Request on your behalf, the agent may do so by emailing us at the above address. We will ask for written, signed permission that the agent has been authorized to act on your behalf. Once written authorization is provided, we will review your Privacy Rights Request and respond to you as quickly as possible. We will respond directly to the email address provided by the authorized agent regarding the fulfillment of the Privacy Rights Request.
External Links
This Site may contain links to third-party websites. If you use these links, you will leave the Site. We have not reviewed these third-party sites and do not control and are not responsible for any of these sites, their contents, or their privacy policies. Thus, we do not endorse or make any representations about them, or any information, software, or other products or materials found there, or any results that may be obtained from using them. If you decide to access any of the third-party sites listed on our website, you do so at your own risk.
Data Security
We employ physical, technical, and administrative procedures to safeguard the personal information we collect online. However, no website is 100% secure, and we cannot ensure or warrant the security of any information you transmit to the Site or to us, and you transmit such information at your own risk.
Data Retention
We retain personal information about you necessary to fulfill the purpose for which that information was collected or as required or permitted by law. We do not retain personal information longer than is necessary for us to achieve the purposes for which we collected it. When we destroy your personal information, we do so in a way that prevents that information from being restored or reconstructed.
International Users
The information that we collect through or in connection with the Services is transferred to and processed in the United States for the purposes described above. Alliance to Cure may subcontract the processing of your data to, or otherwise share your data with, affiliates or third parties in the United States or countries other than your country of residence. The data protection laws in these countries may be different from, and less stringent than, those in your country of residence. By using the Site or by providing any personal or other information to us, you expressly consent to such transfer and processing.
Children
Content on this Site is directed at individuals over the age of 18 and is not directed at children under the age of 13. We do not knowingly collect personally identifiable information from children under the age of 13.
Changes to this Policy
We may make changes to the Site or our programs and activities in the future and, as a consequence, will need to revise this Policy to reflect those changes. We will post all such changes on the Site, so you should review this page periodically. If we make a material change to the Policy, you will be provided with appropriate notice.
How to Contact Us
If you have any questions about our Site or our Privacy Policy, please contact us at info@alliancetocure.org or write to us at Alliance to Cure Cavernous Malformation, 977 Seminole Trail #367, Charlottesville, VA 22901.
Updated 4.8.2024
