Amended November 27, 2018
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 determine. We do not automatically collect email addresses or other personal information unless you provide it to us.
USPS 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 that were printed on the mailing label), and the type of information that you no longer wish to receive from us or wish to limit the number of mailings sent to you each year. Send your request to [email protected] or write to us at 2121 K Street NW, Suite 200, Washington, DC 20037 - USA.
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 [email protected], or by updating your email preferences by clicking on the appropriate link within the email message that you receive.
You may choose to opt out from receiving telephone calls from us or from any third-party that we engage to provide that service for us. You may send your request to [email protected] 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 [email protected], 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.
Telephone Services. When you provide your telephone number when registering on the Site, you consent to receive telephone calls from us, about the Programs, which may be sent by automated means. If, at any time, you wish to stop receiving these telephone calls, simply ask the agent making the call to remove you from the call list.
Email Services. When you provide us your email address when registering on the Site, you consent to receive email messages from us, about the Programs, at the email address you provided to us. If, at any time, you wish to stop receiving email messages from us, follow the “unsubscribe” instructions in a recent email message.
Text Messaging Services. If you have provided a telephone number, you may be asked for your consent to receive limited text messages about the Services. If you consent to receive such text messages, you may receive text messages on your mobile phone or other mobile device about our programs and services, which may be sent by automated means. Message and data rates may apply. This means that your carrier may charge you for each message we send to you or that you send to us. It is your responsibility to know whether your carrier will charge you a per-message fee. We do not charge a fee for our text message programs and assume no responsibility for charges by your carrier you may incur when you sign up to receive text messages from us. You may opt out of a text message program at any time by following the instructions linked in the text message. You will receive a final confirmation message that will confirm that you will no longer receive text messages from the applicable text message program unless you opt back into such program.
Do Not Track (DNT) is a privacy preference that users can set in some web browsers, allowing users to opt out of tracking by websites and online services. At the present time, the World Wide Web Consortium (W3C) has not yet established universal standards for recognizable DNT signals and therefore, we do not recognize DNT.
Use by Third Parties. We do not sell your personally identifiable information to third parties. We do utilize the services of trusted third-party providers to assist us with contacting you through direct communication methods and through marketing and advertising, which may require us to share your personally identifiable information to those third-party providers. We use, and we require our third-party providers to use, industry-standard security techniques at the Sites to help protect against the loss, misuse or alteration of information we collect.
For more information. If you have any further questions regarding our privacy practices, please email us at [email protected]
Information You Provide:
When you submit an inquiry to the Health Educator we ask for certain contact information including, but not limited to, your first and last name, e-mail address, phone number and mailing address in order to respond to your inquiry.
Health Information and Demographic Information
Your submission to the Health Educator may include health information, such as diagnosis information. In addition, when responding to your inquiry we may ask for additional health information to better respond to your request. We also ask for demographic information in order to better improve our services. You are not obligated to provide any health or demographic information you do not want to provide.
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 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 specifically indicate you would like to do so. Only members of our Data Management Team and other personnel with a need to know have access to the identifiable information described above.
We may use this information to allow us to improve the Site and the services we provide, as well as to better understand the needs of our constituents. We may do so by aggregating this information and creating reports that do not contain any individually identifying 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 its own safeguards for the information you provide. You can find detailed information at lupus.org/registry. A summary of that information is provided in this section as well. The Registry is open only to individuals with a lupus diagnosis.
Information You Provide:
The Registry asks for your contact information including your e-mail, mailing address and phone number in order 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 demographics. The information allows us to better focus our programs and services to your needs as well as to identify study opportunities for which you may be a match.
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. In addition, 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.
- No individual contact or personal health information is ever shared 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 where your contact information, date of birth and other information that could identify you is removed.
- 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 [email protected] 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 lupus.org/research/enroll-in-a-lupus-research-interest-group.
Information You Provide:
The Lupus Interest Group registration process asks for your contact information including your e-mail, mailing address and phone number in order 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. This information is collected in order to better communicate to 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 need to know have access to the 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 [email protected].
Our online support community, LUPUSCONNECT, is operated by a third-party service, Inspire, through a contractual agreement us.
Information You Provide:
How We Use and Disclose Information Provided to the Interest Group
Strategies to Embrace Living with Lupus Fearlessly (SELF) is an online lupus self-management program, that offers ideas, suggestions, and tools that can help you reach personal goals to manage your lupus. This program is open only to individuals with lupus who are age 18 and over.
Information You Provide:
You must register to participate in the SELF Program. You will need to create a username and password and provide your email address, phone number and other information about yourself. We use your e-mail address and phone number to deliver health education messages, reminders about helpful self-management strategies and invitations to take an optional survey that helps us improve SELF.
The SELF program includes health information questions about your health status and quality of life. We also ask questions about your date of birth and other statistical information. This information enables us to tailor the SELF Program and other services to better meet your needs.
How We Use and Disclose Information Provided to SELF:
- We will never disclose personal information that could identify you, such as your date of birth, contact information and your health status.
- We may use and disclose information that you and other groups of participants provide to us in aggregate (summary) form, which does not include your identifiable information.
- We may use this aggregate information to improve the SELF Program and the services we provide, and to create reports that help us better understand the needs of our constituents.
- We also may use or disclose information that you provide using a code that removes your contact information, date of birth and other information that could identify you.
- At the time you register for the SELF Program you also may choose to opt-in to receive other types of communications from the Lupus Foundation of America.
Protecting the privacy of the very young is especially important. For that reason, this Site is not directed to, nor do we knowingly collect information from children under the age of 13. The Registry may collect certain 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 at the contact information listed below.
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 thereto will be transferred to the United States, which may not provide the same level protection for your personal information as available within your home country and may be available to the United States government or its agencies under a lawful order made 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.
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 security of 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 We Collect
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
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.
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.
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.
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
- 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);
- 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
- 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;
- 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.
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.