Any information on Lupus

Information You Provide

We and our service providers collect any information that you provide when you use the Site, including when you create an account, make a donation, purchase a product, participate in our message boards or forums or research, register for an event or class, sign up to receive our electronic newsletters or subscribe to our magazine, sign up for advocacy alerts or email lists, participate in polls and surveys, or otherwise contact us with a question, comment, or request.

The information that you provide us can include, but is not limited to, (a) your name, contact information, username, password, email address and other registration information; (b) transaction-related information or payment card information, such as when you make donations or purchases; (c) information you provide when participating in research, an interest group, or a message board; and (d) information you provide us when you contact us.

Information Automatically Collected From You

We and our service providers may automatically collect certain technical information from your computer or mobile device when you use the Site, such as your Internet Protocol (IP) address or unique identifier, your browser type, your operating system, the pages you view on the Site, the pages you view immediately before and after you access the Site, and the search terms you enter on the Site.

This information allows us to recognize you and personalize your experience if you return to the Site, and to improve the Site and the services we provide.  We and our service providers may collect this information using “cookies,” which are small text files that the Site saves on your computer using your web browser and accesses when you return, or similar technologies.


A “cookie” is a small file placed on your computer to allow a website to recognize your computer on return visits. Like most websites, we use cookies to manage certain website features and to provide localized information. These cookies do not contain information typically used to identify you, but they may contain demographic (such as language preference) or interest-based information.  Other technologies are used for similar purposes as a cookie on other platforms where cookies are not available or applicable, such as the Advertising ID available on Android mobile devices. Most web browsers give you options for preventing, accepting, or receiving notice of new cookies.  If you reject cookies, you may still use our Site, however, some Site features may be lost or not function properly.

Many consider the use of cookies for these purposes to be an industry standard. Consequently, your web browser is likely set to accept cookies or allow other identifiers. There are several options for opting out of cookies and other tracking technologies, which include but are not limited to setting your web browser to private or incognito mode, opting out of the collection of data on your web and application activity through your mobile device or desktop computer.

Please note that if you delete, reject, or otherwise prohibit cookies, or if you use a different computer or Internet browser, you may need to renew your opt-out choice.

Information Collected by Third Parties

We use third party tools and services such as Google Analytics and AdWords that may deploy cookies, pixel tags, or similar tracking technologies to collect, analyze and report on Site activity and evaluate marketing campaign performance. A pixel tag is a type of technology placed on a website or within the body of an email for the purpose of tracking activity on websites, and all of the information resources provided through them.

Statistical Data

We collect information such as the total number of visitors, the date, time, length and frequency of visits, the average length of time and total number of times that visitors view each page, the device and software used to access our websites, how visitors arrived at our Site, and the domain name and locations of visitors' internet service providers.   We also compile lists of the keywords and search terms that visitors used to find information published on our Site, and the websites or search engines that referred visitors to our websites.

Geolocation Data

When you access and use the Site, we may receive, store and process different types of information about your geographic location, including general information (e.g., zip code) and more specific information (e.g., GPS-based functionality on mobile devices used to access the Sites). If you access the Site through a mobile device and you do not want your device to provide us with location-tracking information, you can disable the GPS or other location-tracking functions on your device, provided that your device allows you to do so. Please see your device manufacturer’s instructions for further details.

How We Use Information Collected on our Site

In General, except as described elsewhere in this Privacy Policy, we and our affiliates and subsidiaries may use the information we collect for a number of purposes, including, but not limited to the list below. For clarification, this list does not apply to information you provide while seeking specialized services (Health Educator line, Lupus Research Registry, etc.) described in the section on Additional Privacy Practices for Specialized Services & Resources.

  • providing you with products, services, or information you request;
  • fulfilling and acknowledging your orders and donations;
  • providing you with information about the Site or required notices, alerts, eNewsletters, announcements, and breaking news;
  • delivering communications, promotional materials, or advertisements from us or our partners that may be of interest to you except that we will not use your payment card information to deliver such communications from our partners;
  • customizing your experience when using the Site, such as by providing interactive or personalized elements on the Site and providing you with content based on your interests;
  • allowing us to improve the Site and the services we provide, such as by better tailoring our content to our users’ needs and preferences;
  • generating and analyzing statistics about your use of the Site;
  • helping our advertisers and sponsors better understand our users (provided that for such purposes we only use de-identified information);
  • detecting, preventing, and responding to fraud, intellectual property infringement, violations of our terms of use, violations of law, or other misuse of the Site; and
  • such other uses within the context of the foregoing uses.

We also may combine or aggregate any of the information we collect through the Site or elsewhere for any of these purposes.

How We Disclose Information Collected on our Site

In General, except as described elsewhere in this Privacy Policy, we and our affiliates and subsidiaries may disclose the information we collect:

  • to our affiliates and subsidiaries;
  • to service providers who work on our behalf and who have agreed to use the information solely in furtherance of our operations;
  • to business partners who help us provide website functionality (e.g., account logon) and partners who may deliver marketing communications, promotional materials, or advertisements that may be of interest to you except that we will not share your payment card information with partners to deliver such communications;
  • as required by law, such as to comply with a subpoena or other legal process, or to comply with government reporting obligations;
  • when we believe in good faith that disclosure is necessary (a) to protect our rights, the integrity of the Site, or your safety or the safety of others, or (b) to detect, prevent, or respond to fraud, intellectual property infringement, violations of our terms of use, violations of law, or other misuse of the Site; and
  • to affiliates, service providers, advisors, and other third parties to the extent reasonably necessary to proceed with the negotiation or completion of a merger, combination, acquisition, or sale of all or a portion of our assets.

In addition, we may share de-identified reports on user demographics and traffic patterns, as well as de-identified information, with third parties.

Email Addresses

Except as described above, we never share your email address with anyone outside of our organization without your consent.

Sharing with Non-Profits

Periodically, we will exchange the names and mailing addresses and contact information, but not email addresses, of our donors, event participants, subscribers, and store customers with other reputable non-profit organizations.

Page Links Contained within Email Messages

When you click on a page link contained within an email message, advocacy alert or eNewsletter that you receive from us, that information is stored as part of your online profile.  This information helps us determine which articles or topics are of greatest interest to you so we can better serve you in the future.  The information is not shared with others without your consent and is used only to help us deliver future content that is more tailored to your individual interests or needs.