Privacy Policy

Your privacy is important to The Lupus Foundation of Northern California (LFNC), formerly known as The Bay Area Lupus Foundation (BALF). We understand that health is a very personal, private subject, and we want you to feel as comfortable as possible visiting our website and using its services. Perhaps you are visiting the LFNC website to learn about health for yourself, perhaps on behalf of someone else. This Privacy Policy and Agreement ("Privacy Policy") will tell you what information we collect about you and about your use of our website. It will explain how we protect that information and what choices you have about how it is used. We urge you to read this Privacy Policy carefully so that you will understand clearly both our commitment to you and your privacy, and how we may collect and use information. By using the LFNC web site, you agree to the terms of this Privacy Policy.
The Lupus Foundation of Northern California will inform you of the following in this privacy policy:

• What personally identifiable information of yours is collected;
• What organization is collecting the information;
• How the information is used;
• With whom the information may be shared;
• What choices are available regarding collection, use and distribution of the information;
• What kind of security procedures are in place to protect the loss, misuse or alteration of information under our control; and,
• How you can correct any inaccuracies in the information.

Please remember that any information (including personal and medical information) that you reveal in a LFNC public forum (such as a bulletin board, mail list, chat room/event) is not protected by this Privacy Policy. Third parties not related to LFNC will see such postings. What you've written could be used by others in ways we are unable to control or predict, including to contact you for unauthorized purposes. Also, if you access a third party site from a link on LFNC, any information you reveal on that site is not subject to this Privac Policy. You should consult the privacy policies of each site you visit.

Information We Collect
Personal Information is information that can be used to identify or contact you. LFNC collects only the personal information you provide to us. We collect the Personal Information that you provide to us in two general and distinct ways: (1) When you register as a User and/or when you update your User Profile, and (2) When you choose to use various LFNC Services or participate in surveys. We also collect non-personal information through the use of "cookies." LFNC does not store any personally identifiable information in any cookies on your computer. All of these are described in more detail below.

Registration and User Profile
You may use our website without registering or submitting any Personal Information. In that case, the only information we collect will be non-personal information collected through the use of cookies (see details below). However, in order to have access to certain services and content available on our site (e.g., your personal profile), you are required to complete a registration form. We use the Personal Information that you provide through registration to respond to questions from you and/or inform you of significant changes to this Privacy Policy. We may also use this information to send you emails with special promotions or newsletters with content that we think may be of interest to you. (Note:  LFNC emails:  opt-out permission; Third-party emails:  opt-in permission.  You can always opt-out of receiving such emails or unsubscribe to newsletters at the time you register or at any time.

The information we collect in the Registration form and Member Profile is set forth below. Required information is indicated by an asterisk*. Provision of all other information is optional.

Cookies
We also collect anonymous, non-personal information about your use of our site through the use of "Cookies ” Cookies are small computer files that we transfer to your computer's hard drive that allow us to know how often someone visits our site and the activities they conduct while on our site (such as the chatrooms you visited, etc.). Every computer is assigned a different cookie by LFNC. The information collected by cookies helps us dynamically generate advertising and content on web pages specifically designed for you and also allows us to statistically monitor how many people are using our site and for what purpose. We may use cookie information to target certain advertisements to your browser or to determine the popularity of certain content.

Your browser software can be set to reject all cookies. Most browsers offer instructions on how to reset the browse to reject cookies in the "Help" section of the toolbar. If you reject our cookie, certain of the functions and conveniences of our site may not work properly but you do not have to accept our cookie in order to productively use our site. While it may be possible to link non-personal cookie information to Personal Information collected in other ways, we want you to know that if you accept our cookie we will not, without your consent, link the cookie information we collect to Personal Information you provide to us on our site.

Sponsors, partners or advertisers on LFNC may also use their own cookies when you click on their advertisement or link to their site or service, or even if the advertisement simply appears on a page that you are viewing. Some advertisers use companies other than LFNC to serve their ads and these companies ("Ad Servers") may also collect non-personal information through the use of cookies on our website. We do not control these third parties' use of Cookies, or how they manage the non-personal information they gather through them. You should review the privacy policy of other sites you visit or link to from our site to understand how these other sites use cookies and how they use the information they collect through the use of cookies on their own sites.

Children
We are committed to protecting the privacy of children. This website is not designed or intended to attract children under the age of 13.

Public Forums
This Privacy Policy does not protect you when you use LFNC public forums. As a service to our users, LFNC features chat rooms and bulletin boards where users with similar medical conditions can share information and support one another. In addition, we offer online discussions on a variety of topics moderated by medical experts. You should be aware that any information shared in a chat room, bulletin board or online discussion is public information and may be seen or collected by third parties that do not adhere to our Privacy Policy. You should think carefully before disclosing any personal information in any public forum.

Disclosure of Your Information
Except as set forth in this Privacy Policy or as specifically agreed to by you, LFNC will not disclose any Personal Information it gathers from you on our website. We may release Personal Information to third parties: (1) to comply with valid legal requirements such as a law, regulation, search warrant, subpoena or court order; or (2) in special cases, such as a physical threat to you or others. In the event that we are legally compelled to disclose your Personal Information to a third party, we will attempt to notify you unless doing so would violate the law or court order.

Disclosure to LFNC Subsidiaries
LFNC may disclose Personal Information to its corporate subsidiaries. Any Personal Information provided to subsidiaries of LFNC will be treated by those subsidiaries in accordance with the terms of this Privacy Policy.

Disclosure to LFNC Operations and Maintenance Contractors
LFNC operations and maintenance contractors sometimes have limited access to your Personal Information in the course of providing products or services to LFNC. These contractors include vendors and suppliers that provide us with technology, services, and/or content related to the better operation and maintenance of our website. Unless you have opted out of receiving emails and newsletters from LFNC, these contractors also may have access to your email address to send newsletters to you on our behalf or to send emails to you for purposes such as conducting market research on our behalf. Access to your Personal Information by these contractors is limited to the information reasonably necessary in order for the contractor to perform its limited function for LFNC. We also contractually require that our operations and maintenance contractors (See comment re LFNC/third party emails and opt-in/opt-out permissions) 1) protect the privacy of your Personal Information consistent with this Privacy Policy, and 2) not use or disclose your Personal Information for any purpose other than providing us with products and services.

Disclosure to Website Service and Content Contractors
Certain content and services offered to you through our website are served on websites hosted and operated by a company other than LFNC ("Third Party Contractor Websites"). Similarly, if you purchase an item through one of LFNC’s co-branded stores (e.g., Amazon.com), you will be purchasing it from the Third Party Contractor Website (i.e., Amazon.com) and not LFNC. LFNC does not disclose your Personal Information to these Third Party Contractor Websites without your consent, but you should be aware that any information you disclose once you access these other sites is not subject to this Privacy Policy. LFNC does not endorse and is not responsible for the privacy practices of these Third Party Contractor Websites. You should review the privacy policy posted on the othe site to understand how that Third Party Contractor Website collects and uses your Personal Information.

Disclosure to Linked Sites
In addition to the Third Party Contractor Websites that you may access as described above, for your convenience there are links to websites operated by companies other than LFNC ("Third Party Websites") that are not contractors who provide content or services through our website. These links may be found in advertisements, referenced within content, or placed beside the names or logos of sponsors. LFNC does not disclose your Personal Information to these Third Party Websites and LFNC does not endorse and is not responsible for the privacy practices of these sites. If you choose to link to one of these Third party Websites, you should review the privacy policy posted on this other site to understand how that Third Party Website collects and uses your Personal Information.

Disclosure of Aggregate Information
LFNC may provide to third parties non-personal information about you that does not allow you to be identified or contacted and that is combined with the non-personal information of other users ("Aggregate Informatio "). For example, we might inform third parties regarding the number of users of our site and the activities they conduct while on our site. We might also inform a pharmaceutical company (that may or may not be an advertiser on our site) that "15% of our users live east of the Rockies" or that "45% of our users have trie alternative medicine." Depending on the circumstances, we may or may not charge third parties for this Aggregate Information. We also may not limit the third parties’ use of the Aggregate Information, except that we do require third parties to whom we disclose Aggregate Information to agree that they will not attempt to make this information personally identifiable by combining it with other databases or otherwise.

How LFNC Handles Privacy and Security Internally
LFNC wants your Personal Information to remain as secure as possible. That is why we have a two-tier security system at LFNC that combines leading technical safeguards and a code of conduct for those employees that are permitted to access our customers' Personal Information.

On the technical side, LFNC uses Secure Socket Layer (SSL) encryption technology in transmitting your personal information to our servers to help ensure the integrity and privacy of the Personal Information you provide to us via the Internet. Encryption involves systematically scrambling numbers and letters, so that even if someone manage to intercept the information, they would not be able to make sense of it. In order to take advantage of this encryption technology, you need to have an Internet browser that will support 128-bit encryption, such as Netscape or Microsoft Explorer. As an additional security measure, your Personal Information is also kept physically separate on a separate server where your password is encrypted and stored on a database

On the employee side, only a limited number of LFNC employees are authorized to access your Personal Information. All LFNC employees must abide by our Privacy Policy and those who violate our Privacy Policy are subject to disciplinary action, up to and including termination. Access by authorized personnel is controlled by two-factor authentication (i.e., a token and a thumbprint). Although we will make every reasonable effort to protect your Personal Information from loss, misuse, or alteration by third parties, you should be aware that there is always some risk involved in transmitting information over the Internet. There is also some risk that thieves could find a way to thwart our security systems.

Your Privacy Choices
When you complete Registration or update your User Profile, you will be given the option of receiving recurring informational/promotional emails from LFNC and/or third parties. You may opt out of receiving emails from or on behalf of LFNC at Registration by removing the automatic check mark from the statement that expresses a preference for receiving these emails and newsletters. You may also opt out of receiving these emails and newsletters at any time by changing your preferences within your User Profile.

We ask for contact information (such as name and email address) if you wish to subscribe to various newsletters. You can unsubscribe from such newsletters very easily. When you have received a newsletter you wish to stop, click on the "reply" button in your mail program, then type in the word "UNSUBSCRIBE" in the " Subject" field and send. LFNC will unsubscribe you from that newsletter in two to three business days.

At Registration and at various times as you use the site, you may have the option of receiving emails or newsletters from third parties, (Note:  See notation re LFNC/third party emails and opt-in/opt-out permissions. participating in research or marketing surveys and participating in other activities. You may exercise these options by placing a check mark beside a statement that expresses a preference for receiving these communications or participating in these activities. You may change your decision at any time by changing your preferences within your Profile or by following other directions provided in association with the individual communication or activity.

This privacy statement applies only to the LFNC website. The LFNC site does contain links to other sites. Once you enter another website (whether through an advertisement, service, or content link), be aware that LFNC is not responsible for the privacy practices of such other sites. We encourage you to look for and review the privacy statements of each and every web site that you visit through a link or advertisement on LFNC's site or any site that collects Personal Information from you.

Updating Your Personal Information and Contacting BALF
You can always contact us in order to (1) delete your Personal Information from our systems, (2) update the Personal Information that you have provided to us, and (3) change your preferences with respect to marketing contacts or other activities, by emailing us at development@balf.org .

Such changes will not have any effect on other information that LFNC maintains.

You should be aware that it is not technologically possible to remove each and every record of the information you have provided to LFNC from our servers. The need to back-up our systems to protect information from inadvertent loss means that a copy of your personal information may exist in a non-erasable form that will be difficult or impossible for us to locate. Nevertheless, we promise that upon receiving your request, all personal information stored in the databases we actively use for research and daily business activities, and other readily searchable media, will be deleted.

Contacting our Website
Comments or questions sent to us via "Email Us", will be shared with our customer service representatives or staff most capable or addressing your questions and concerns. We will retain your email until we have made our best effort to provide you with a complete and satisfactory response and then we either discard it, or in some cases, archive it.

The email facility at our site does not provide a means for completely secure and private communications between us. Your email, like most non-encrypted Internet email communications, may be accessed and viewed without your knowledge or permission while in transit to us, If you consider the information you are communicating to be confidential, please do not use email.

Privacy as it applies to the Internet is a dynamic, rapidly developing area. In the future, we may make significant changes to our privacy policy affecting the use of the Personal Information we collect. We will notify you by email of any significant changes and obtain your "opt-in" consent to any significant new uses of your Personal Information, if it was collected from you prior to a significant change in this policy. We may also make non-significant changes to our Privacy Policy that generally will not affect our use of your Personal Information. You should also check this posted Privacy Policy for any future changes. If you do not agree to the terms of this Privacy Policy or any revised policy, please exit the site immediately.

Privacy Policy Contact Information

Email will be read and responded to on a first come basis during the hours of 9 AM – 5 PM PT, M-F (excluding holidays).
Email should be sent to: development@balf.org

Customer Service/Support Information
Contact information : Email will be read and responded to on a first come basis during the hours of 9 AM – 5 PM PT, M-F (excluding holidays). You may reach us by telephone at 408-954-8600 or contact us via email at development@balf.org.

Online Service Agreement
Please see our Online Service Agreement for other terms and conditions governing your use of The Lupus Foundation of Northern California (LFNC) Web site.
Revised August 2007

General Comments from Andy Gaudin, Senior Director of Legal Affairs – Coremetrics, Inc.:

1. BALF should identify any third party service providers that may place a cookie on the hard drive of any consumer visiting the site AND preferably post a link to each such service provider’s privacy policy.
   
   
2. It’s unclear to me from reading this policy whether the default setting (i.e., “opt-i ” or “opt-out”) for receiving third party emails is “opt-in” or “opt-out ”  While it’s OK for this setting to be “opt-out” for delivery of BALF marketing materials, the setting should be “opt-in” for delivery of third party materials (according to RECA)
   
   
3. Someone should review with HIPPA regulations in mind.  I don’t know them.