Privacy Policy


Privacy Overview
Why We Collect Information
Information We Collect, and How We Use and Disclose Information
How We Use Information Collected on Our Site
How We Discolose Information Collected on Our Site
Opt-Out Choices for Donors, Subscribers and Event Participants
Additional Privacy Practices for Specialized Services & Resources
Our Commitment to Children’s Privacy
Data Security
Notifying You about Changes to Our Privacy Policy
Information Disclosed During Legal Procedures
Information Processing
Policy Acceptance


We respect the privacy of all visitors to our websites. This Privacy Policy describes the ways in which the Lupus Foundation of America (“we,” “our,” or “us”) collect, use, and disclose information about you through our websites and online services that link to this Privacy Policy, which include, the embedded websites of our national network affiliates, and all other related domains and sub-domains, including,,,,,,,, and (collectively, the "Site").  By using the Site, you consent to the processing of your information as outlined in this Privacy Policy, now and as amended by us.


We use data gathered through our Site for a number of purposes, including, but not limited to: distributing information, conducting programs, providing services, processing orders and donations, responding to questions, fulfilling requests, monitoring and improving the effectiveness of our websites, planning for future improvements and as we otherwise agree.  We do not automatically collect email addresses or other personal information unless you provide it to us. 



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 research registry or online community, register for an event or class, sign up to receive our electronic newsletters, 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 you provide to 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.


We and our service providers may automatically collect specific technical information from your computer or mobile device when you use the Site.  The information may include 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,” or through similar technologies.


A “cookie” is a small file placed on your computer that allows 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 include 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, configuring 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 period 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.


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 offer, 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 purposes.

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


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 login) 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, mailing addresses and other contact information, but not email addresses, of our donors, event participants, subscribers, and store customers with other reputable non-profit organizations. This information exchange helps us lower costs to reach potential new constituents and supporters.  You have the right to opt-out of such information exchanges as described below.

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 interests or needs.


Surface Mail Communications

You may choose to opt-out of receiving some or all surface mailings from us.  Send your full name and complete mailing address (along with any codes contained on the mailing label), and the type of information that you no longer wish to receive from us or want to limit the number of mailings sent to you each year. Send your request to or write to us at 2121 K Street NW, Suite 200, Washington, DC 20037 - USA.

Email Communications

You may choose to limit or opt-out from receiving email communications from us at any time. You may unsubscribe from future email messages by sending your request to, or by updating your email preferences by clicking on the appropriate link within the email message that you receive.

Telephone Communications

You may choose to opt out from receiving telephone calls from us or any third-party that we engage to provide that service for us.  You may send your request to or by writing to us at the address provided above. You may also call our office during business hours at (202) 349-1155
Information Exchanges with Other Organizations

You may request that we not sell or exchange your name and mailing information with other organizations by sending an email message to, or by writing to us at the address provided above. Please include your full name and complete mailing address (along with any other information that will help us to locate your record) and a request that we not exchange your information with other organizations.



Information You Provide

Contact Information
When you submit an inquiry to the Health Educator, we ask for specific contact information including, but not limited to, your first and last name, e-mail address, phone number and mailing address to respond to your inquiry.

Health Information and Demographic Information
Your submission to the Health Educator may include health information, such as diagnosis information.  Also, when responding to your inquiry we may ask for additional health information to better respond to your request. We also ask for demographic information to better improve our services. You are not obligated to provide any health or demographic information you do not want to provide.

Inquiry Information
The inquiry information we collect may include any information you elect to provide in the form of a question to the Health Educator. This information also includes the subject of subject of the inquiry, the date of the inquiry, and information regarding individuals on whose behalf you may be seeking information.

How We Use and Disclose Information Provided When You Contact the Health Educator Online

Submitting an inquiry online does NOT enroll you to receive other communications from us unless you explicitly indicate you would like to do so.  Only members of our Data Management Team and other personnel with a specific need-to-know have access to the identifiable information described above.  We may use this information to improve the Site and the services we provide, as well as to better understand the needs of our constituents.  We may aggregate this information and create reports that do not contain any individually identifiable information or contact information.  We may use your location information to help us better serve you and identify resources that may be specific to your geographic location.  We do not share or sell any of the information described above with any non-affiliated third party. We may, however, us this information to provide you with information from non-affiliated third parties.


The Lupus Research Registry (the "Registry") is a formal research registration program with appropriate safeguards for the information you provide. You can find detailed information at  There also is a summary of the information that we request from you. The Registry is open only to individuals with a lupus diagnosis.

Information You Provide

Contact Information
The Registry asks for your contact information, including your e-mail, mailing address and phone number to contact you about studies that may be of interest to you or to the individual you are registering.

Health, Research, and Demographic Information
The Registry contains several questions about your health and quality of life. This information is considered health information. We also ask questions about your date of birth and other demographic information. The data allows us to better focus our programs and services to your needs and to identify study opportunities for which you may be a match.

Informed Consent
To enroll in the Registry, you will be asked to complete an Informed Consent form, which includes your electronic signature.  This form will provide information on the Registry, and any risks of participation.  Additional Informed Consent forms may be required to participate in specific research studies.

How We Use and Disclose Information Provided to the Registry

Information submitted through the Registry is subject to the requirements set forth by a third-party Institutional Review Board and any informed consents to which you agree. Details about those processes will be made available to registry participants. Also, except as required by an Institutional Review Board, and any informed consents:

  • Signing up for the Registry does NOT sign you up to receive other types of communications from the Lupus Foundation of America. 
  • We never share individual contact or personal health information with third parties without your explicit consent.
  • We may use and disclose your information in aggregate (summary) form about groups of participants, which does not include your identifiable information.
  • We may use or disclose your information using a code that hides your contact information, date of birth and other information that could identify you.
  • We may disclose your contact information to another organization conducting a study or survey that collects information similar to what you have previously provided to the Registry. In those cases, they may ask for your permission to receive specific data points from the Registry. If you agree to this, we will disclose only those data points. If you do not give your permission, we will not disclose that information.

How to Unsubscribe from the Registry

You may unsubscribe from the Registry at any time by sending an e-mail to When you unsubscribe from the Registry you will no longer be contacted by the Registry about study opportunities.


Unlike the Registry, the Lupus Interest Group is not a formal research study. The Lupus Research Interest Group (the "Interest Group") is an online forum where you can sign up to receive information about opportunities for participating in research that may be interesting to you. To read more about the difference between participating in the two options, please go to

Information You Provide

Contact Information
The Lupus Interest Group registration process asks for your contact information including your e-mail, mailing address, and phone number to contact you about studies that may be of interest to you or to the individual you are enrolling. Registering for the Interest Group does NOT sign you up to receive other types of communications from us.

Demographic and Health Information
The Interest Group enrollment will ask for fewer details about your health and quality of life than the Registry enrollment. Instead, you will answer a few general questions about your diagnosis process and demographics.  We collect this information to better communicate with you about our programs, services and informal studies that meet your specific needs.

How We Use and Disclose Information Provided to the Interest Group

Only members of our Data Management Team and other personnel with a specific need-to-know have access to the personally identifiable information described above.  Your information may be disclosed in aggregate (summary) form in a way that does not contain identifiable information.

How to Unsubscribe from the Lupus Interest Group

You may unsubscribe from the Interest Group at any time by sending an e-mail to


Our online support community, LUPUSCONNECT™, is operated by a third-party service, Inspire, through a contractual agreement us.

Information You Provide

To participate in the LUPUSCONNECT community, you must register for the service, which includes creating a username and password and providing an email address. When you sign up for LUPUSCONNECT, you agree to Inspire’s terms and conditions, including the company’s privacy policy, which is available on their website. 

How We Use and Disclose Information Provided to the Interest Group

The LUPUSCONNECT message boards are available for public use by all individuals who agree to and abide by Inspire’s Terms and Conditions.  Any information shared on the message boards may be shared with others who see it, as well as by us, per this Privacy Policy.


Protecting the privacy of the very young is especially important. For that reason, this Site does not request or knowingly collect information from children under the age of 13. The Registry may receive specific information from parents on behalf of children in connection with research initiatives subject to any other Institutional Review Board requirements and applicable law.

If you become aware that your child or any child under your care has provided us with information without your consent, please contact us using the contact information provided above.


We strive to maintain reasonable administrative, technical, and physical safeguards designed to safeguard the information collected by the Site.  However, no information system can be 100% secure, so we cannot guarantee the absolute security of your information.  Moreover, we are not responsible for the protection of the information you transmit to the Site over networks that we do not control, including the Internet and wireless networks.[

How the Foundation maintains the credit card and personal information it collects

The security of your personal information is important to us. All communications between your browser and our payment system is encrypted using secure socket layer technology (SSL). You will notice the "Locked" ICON and “Blackbaud, Inc.”  (the company that provides our donor CRM software) appear in the address bar in your browser. We follow generally accepted industry standards to protect the personal information submitted to us, both during transmission and once we receive it. All servers are protected and monitored by leading firewall technology 24-hours a day.


We will post changes to this privacy statement on the Privacy Policy homepage, and other places we deem appropriate, so our users will be are notified of the information we collect, how we use it, and under what conditions, if any, we disclose it. We will use the information per the Privacy Policy in effect at the time we collected the data.


We may disclose personal information when legally required to do so. We may also disclose personal information to protect against misuse or unauthorized use of the Site or to limit legal liability or to protect our interests or those of others.


If you are located outside of the United States when you use the Site, any information you submit to it will be transferred to the United States, which may not provide the same level protection for your personal information as might be available within your home country.  Your information may be made available to the United States government or its agencies under a lawful order issued in the United States. Accordingly, by using the Site and submitting personal information there, you authorize the transfer of your personal information to the United States.


By using this Site, you consent to the collection and use of the information as described above. We reserve the right to update or modify this Privacy Policy at any time.


This privacy policy was last updated on September 13, 2018