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Privacy Policy

The Lupus Research Alliance is committed to protecting your privacy. This Privacy Policy describes how we lawfully collect, use, retain, and protect your personal information. We may update this Policy from time to time to reflect changes in our practices and applicable law. If we believe that any such changes are material, we will let you know about them by posting the changes here and/or sending you an e-mail or other message about the changes. All changes to the Policy are effective immediately upon posting. We encourage you to check back regularly and review any updates to this Privacy Policy.

When This Policy Applies

This Privacy Policy applies to the personal data we collect and process through the Lupus Research Alliance’s website – www.lupusresearch.org (our “Site”).

Our Site may contain links to third-party websites. Please note that when you click on one of those links, you are entering a separate website for which the Lupus Research Alliance has no responsibility. Your interactions with those websites are governed by their applicable privacy policies. Those policies may be different from ours and we encourage you to read them carefully.

Personal Information We Collect

The Lupus Research Alliance may collect or receive your personal information on our Site in a few different ways.

  • Information You Provide To Us – When you donate to the Lupus Research Alliance, sign-up as a volunteer, choose to receive our newsletter, inquire about hosting or participating in one of our events, submit a research grant application or proposal, or sign-up for our community online forum, you may provide us with one or more categories of personal information, including your:
  • Phone number;
  • Mailing address;
  • E-mail address; and
  • Payment card information.

It is always your choice to provide us with this information. Some of this information, however, is necessary for you to participate in certain activities or events (such as to make a donation or receive our newsletter). Accordingly, if you choose not to provide the information, your ability to use certain functions of our Site, or to participate in certain activities or events, may be reduced or eliminated.

  • Information We Collect Automatically When You Visit Our Site – We automatically collect certain information from you when you visit our Site, such as your Internet Protocol (“IP”) address.

We also use cookies on this Site. A cookie is a small text file that is stored on your computer or device when you visit our Site. This Site uses “session” cookies only, which means that the cookies only last for as long as your browser session is active. Once you close your browser, the session cookie terminates. Cookies are used to collect certain data about your interaction with our Site, including, for example, date and time of access, areas of the Site visited, and number of clicks on the Site.

We also use third-party analytics services, including Google Analytics, to collect information about your use of the Site. Google Analytics and other third-party analytics services use cookies and similar technologies to collect information about the use of our Site and to report website trends, without identifying individuals to us.

  • Special Categories Of Data – The Lupus Research Alliance does not intentionally collect any “special categories of data” under the EU General Data Protection Regulation (“GDPR”), such as health or genetic data, without first obtaining your explicit consent or as otherwise allowed by law.
  • Minors – This Site is not intended for minors (children under the age of 16, or the equivalent minimum age in the relevant jurisdiction) and we do not knowingly collect or process personal information from minors. By using this Site, you represent that you are not a minor. If we learn that a minor’s personal information has been collected, we will take steps to promptly delete the data from our records. If you become aware of any data that we have collected from a minor, please contact us at info@lupusresearch.org.

How We Use The Personal Information We Collect

We use the personal information you provide to us to facilitate any requests, communications, or interactions you may have with our Site or the Lupus Research Alliance, including to:

  • Send you information that you have expressly chosen to receive (e.g., our newsletter or information about volunteering or participating in an upcoming event); and
  • Process payments in connection with any donations you make to the Lupus Research Alliance.

We may also use your personal information to pursue our legitimate interests where your rights and freedoms do not outweigh those interests. This includes to:

  • Send you marketing materials via e-mail or postal mail;
  • Monitor and improve the information security of our Site; and
  • Improve our site and deliver customized, personalized content to you by analyzing trends, tracking users’ movement, and gathering broad demographic information for aggregate use.

We will only share and disclose your personal information outside of the Lupus Research Alliance in the following limited situations:

  • Compliance With Laws. We may share your personal information with law enforcement, other government authorities, or third parties as required by applicable law, subpoena, court order or legal process served on us.
  • Vital Interests and Legal Rights. We may disclose your information where we believe it is necessary to investigate, prevent, or take action regarding potential violations of our policies, suspected fraud, situations involving potential threats to the safety of any person and illegal activities, or as evidence in litigation in which we are involved.
  • Third-Party Service Providers. We may share your information with certain third-party service providers who perform services for us or on our behalf and require access to such information in order to do that work, including, for example, payment processing, data analysis, and hosting services. Please note that any third-party service provider who processes your payment card information in connection with a donation you have made to the Lupus Research Alliance must adhere to the privacy and security standards set by the Payment Card Industry Data Security Standard (“PCI-DSS”) and their own privacy policies and terms of use. We do not store any payment card information on our Site.
  • Other Users. When you share personal information (for example, by posting comments on our community online forum that are not listed in the “private” discussion area), such information may be viewed by all users and may be publicly distributed outside of this Site.
  • With Your Consent. We may disclose your personal information for any other purpose with your express consent.

Except as otherwise expressly stated in this Privacy Policy, we do not share, trade or sell your personal information to anyone outside of the Lupus Research Alliance at any time.

How We Store And Protect Your Information

  • Security – The Lupus Research Alliance goes to great lengths to protect the confidentiality and integrity of any personal information you share with us over the Internet. We treat personal data, such as credit card information, as critical assets that must be guarded at all times against loss and unauthorized access. To ensure the security of your personal information, this Site employs industry-standard security methods.

All information provided to the Lupus Research Alliance is transmitted using Secure Socket Layer (“SSL”) encryption. SSL is a proven coding system that lets your browser automatically encrypt, or scramble, data before you send it to us. We also protect your account information by placing it on a secure portion of our Site that is only accessible by certain qualified employees of the Lupus Research Alliance.

Unfortunately, however, no data transmission over the Internet is 100% secure. While we strive to protect your information, we cannot ensure or warrant the security of such information.

  • Retention – The Lupus Research Alliance only retains your information for as long as necessary to fulfill the purpose(s) for which it was collected or as otherwise required or permitted by applicable law.

How You Can Access and Control Your Information

You have certain rights with respect to your personal information that we process. To the extent provided by applicable laws (including the GDPR), you have the right to:

  • Reject Cookies. If you do not want the Lupus Research Alliance to deploy cookies when you visit our Site, you may block cookies by activating the appropriate setting on your browser. For more information on how you can manage your cookie settings, please consult these sites according to the browser you are using:

o Cookie settings in Internet Explorer

o Cookie settings in Firefox

o Cookie settings in Chrome

o Cookie settings in Safari

If you have consented to our use of cookies on this site, you may withdraw your consent at any time by deleting your cookies using your Internet browser settings.

More information about cookies, including information about deleting cookies, may be found at: http://www.allaboutcookies.org.

  • Object Or Opt-Out. You may have the right to object to our processing of your personal information under certain circumstances. We will respond to your request within 30 days (although we may be allowed to extend this period in certain cases). Generally, after receiving an objection, we will cease processing your information unless we have compelling legitimate grounds to continue processing it, or where the information is needed for legal reasons.

Where we use your data for marketing purposes, you may opt-out of receiving these communications by clicking the “unsubscribe” link that typically appears at the bottom of our e-mails. You have the right to opt-out of receiving our marketing materials at any time.

  • The Right To Access, Update or Modify Your Personal Information. You have the right to ask us to confirm what information we hold about you at any time. We will provide you with a copy of your personal information in a structured, commonly-used and machine-readable format upon your request. You also have the right to ask us to modify or update your personal information if it is incorrect or incomplete.
  • The Right To Delete Your Personal Information: You may also ask us to delete your personal information. Your right to deletion is determined by applicable law and may impact your access to some of the services on our Site. Depending upon which laws apply to your personal information, we may refuse your request for deletion. Under those circumstances, we will explain your legal rights, the basis for our refusal, and any recourse you may have.
  • The Right To Lodge A Complaint With A Supervisory Authority: If you believe that we maintain your personal data subject to the GDPR, you may direct questions or complaints to the applicable lead supervisory authority. The Lupus Research Alliance is not established in the EU. Accordingly, the relevant supervisory authority should be determined based on your location in the EU. The contact information for all supervisory authorities may be accessed here: http://ec.europa.eu/justice/article-29/structure/data-protection-authorities/index_en.htm.

How To Contact Us

If you have any questions, concerns or complaints about this Privacy Policy, the practice of this site, or your dealings with this Site, please contact us at:

Lupus Research Alliance

275 Madison Ave., 10th Floor

New York, NY 10016

You can also send an e-mail to: info@lupusresearch.org. Please reference this Privacy Policy in the subject line.

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