Privacy Policy


Last Changes to Privacy Policy: November 5, 2015

We are strongly committed to letting you know how we will collect and use your personal information. The policies below are applicable to data and information collected through the LLS Community website that is owned and operated by Leukemia & Lymphoma Society (“LLS, “we” and “us”), including any versions optimized for viewing on a mobile, wireless or tablet device (the “Website”); all apps published by LLS; and all other interactive features, services, and communications provided by LLS (the Website, apps, and other items and services, collectively “Services”). We have established this privacy policy (“Privacy Policy”) to let you know the kinds of personal information we may gather during your visit to the Website and your use of our services (“Services”), why we gather your information, what we use your personal information for, when we might disclose your personal information, and how you can manage your personal information.

Please be advised that the practices described in this Privacy Policy apply only to information gathered online at our Website. It does not apply to information that you may submit to us offline, or to websites maintained by other companies or organizations to which we may link or who may link to us.

By visiting our Website or using our Services, you are accepting the practices described in our Privacy Policy. If you do not agree to the terms of this Privacy Policy, please do not use the Website or Services. We reserve the right to modify or amend the terms of our Privacy Policy from time to time without notice. Your continued use of our Website or Services following the posting of changes to these terms will mean you accept those changes. If we intend to apply the modifications or amendments to this Privacy Policy retroactively or to personal information already in our possession, we will provide you with notice of the modifications or amendments.

If you have any questions about this Privacy Policy or don’t see your concerns addressed here, you should contact us by email at

What Information About Me Is Collected and Stored?

We collect two basic types of information from you in conjunction with your use of the Website and Services, personal information and non-personal information. Personal information is information that you may supply to us, as described more fully below, i.e., when you register for the Website or any part thereof, participate in a community, provide your e-mail address or submit other information to us, including personal health data, or use other Services. Personal information is any information that can individually identify you and includes, among other things, your name, e-mail address, telephone number, postal address, credit card, billing and contact information. Non-personal information includes information that does not personally identify you, but it may include tracking and usage information about your location, demographics, use of the Website, Services and the Internet.

Personal Information

As a general matter, you can browse portions of the Website without submitting your personal information to us. However, there are a number of circumstances in which you may supply us with your personal information. The following lists the most common ways in which we may collect your personal information.

  • Registration for an account on the Website and logging-in to your account
  • Profile information that you provide for your user profile
  • Sign up to receive news, alerts or other information via email, text or instant message from LLS
  • Requests for information or other assistance, inquiries and other communications to us
  • Participation in surveys, special events and promotions
  • Participation in communities, chat rooms and comment threads, other fora, and other interactive services
  • Submission of content or other data and information on any part of the Website or Services that permits it
  • Participation on social media accounts involving LLS, our Website, Services and programs
  • Any other place on the Website or Services where you knowingly volunteer personal information

Collection of Personal Information From or Through Social Media Website

When you interact with any LLS online property, webpage or account on a social media platform, such as Twitter, Facebook, Google+, Tumblr, LinkedIn, YouTube, or Pinterest, we may collect the personal information that you make available to us on that page or account including your account ID or “handle.” However, we will comply with the privacy policies of the corresponding social media platform and we will only collect and store such personal information that we are permitted to collect by these social media platforms.

Non-Personal Information

In addition, when you interact with the Website or Services, we may collect certain information that does not identify you individually and our servers may automatically keep an activity log of your use of our Website or Services (“Non-Personal Information”). Generally, we collect and store the following categories of Non-Personal Information:

  • Non-identifiable demographic data such as age, gender, and five digit zip code as part of collecting personal information
  • Device information about your computer, browser, mobile device, or other device that you use to access the Website or Services. This information may include IP address, geolocation information, unique device identifiers, browser type, browser language, and other transactional information.
  • Analytics and usage information about your use of the Website and Services.
  • Additional “traffic data” and log files such as time of access, date of access, software crash reports, session identification number, access times, and referring website addresses.
  • Your search terms and search results.
  • Other information regarding your use of the Website and Services.

Collection of Your Source IP Address/Location Information

We will collect and store location information about you on the Website and Services and associated with your account that you volunteer on, or enable through, the Website or Services. We will not collect any location information that you do not volunteer or enable. We will delete any location information that you request be deleted. We also collect and store your device’s source IP address which may disclose the location of your device at the time you access the Website or Services. Certain content may be directed to you as a result of this data.

In addition, in some cases the Website and Services can deliver content based on your current location if you choose to enable that feature. If you enable that feature, your current location will be stored locally on your device which will be used by the Website and Services to serve you certain content tied to your location. If you elect to have your location-based searches saved to your history, we will store such information on our servers.

Collection of Personal and Non-Personal Information From Other Sources

We also may collect and store information about you that we receive from other sources (including by us from our offline interactions with you) to, among other things, enable us to update and correct the information contained in our database, to better customize your experience on the Website and Services and to improve the Website and Services.

Collection of Personal and Non-Personal Information Through Surveys

From time to time we may provide you with the opportunity to participate in surveys on our Services, which might be conducted by a third party. If you participate, we will request certain personal information from you. Participation in these surveys is completely voluntary and you therefore have a choice whether or not to disclose this personal information. The requested personal information typically includes contact information. If there is a third party involved, please make sure to review that party's privacy policy

Use of Cookies, Flash Cookies and Web Beacons

Like many websites, we use “cookies”, which are small text files that are stored on your computer or equipment when you visit certain online pages that record your preferences and actions. We use cookies to track use of our Website and online services. We may also use cookies to monitor traffic, improve the Website and Services and make it easier and/or relevant for your use.

You have the ability to accept or decline cookies. Most web browsers automatically accept cookies, but, if you prefer, you can usually modify your browser setting to decline cookies. If you delete your cookies or if you set your web browser to decline cookies, some features of the Website or Services may not work or may not work as designed. For more information on cookies and how to disable them, you can consult the information provided by the Interactive Advertising Bureau at

We may also use web beacons or flash cookies. A web beacon or flash cookie (also known as “action tags”, “tracer tags”, or “single-pixel gifs”) is an invisible graphic on a web page that is programmed to collect non-personal information about your use of a given website. We do not share or provide Personal Information we may collect through such web beacons, such as names, e-mail addresses and phone numbers without your express permission.

We may also use “Web Storage” to store data about your use of our Website. Web Storage is a feature in some browsers that permits websites to store data within your browser rather within a cookie. This should make this data more secure and make your browser perform better. We do not share or provide Personal Information we may store in Web Storage, such as names, e-mail addresses and phone numbers without your express permission.

Is Personal Information Collected From Children?

Unless otherwise disclosed during collection and with parent or guardian consent (for instance, in some of the educational areas on our Website or Services), LLS does not knowingly collect personal identifiable information from children under 13 years of age. If you are under 13 years of age you should not provide personally identifiable information to LLS without providing us with consent from your parents. If LLS discovers that a child under the age of 13 has provided LLS with personally identifiable information and we do not have parental consent, LLS will delete that child’s information from the Website and Services.

How Do We Use Your Information?

We use the information we learn from you to help us personalize and continually improve your experience on the Website and Service. We may use your Personal and Non-Personal Information in the following ways:

General Uses

  • Upload your content to the Website and Services at your request
  • Provide you with the Services and information you request
  • Communicate with you about your account or transactions with us (including service-related announcements) and send you information about features and enhancements on or to our Website
  • Communicate with you about changes to our policies
  • Communicate with you about your comment to a community
  • Personalize content and experiences on our Website and Services, including providing you reports, recommendations and feedback based on your preferences
  • Optimize or improve our Website, Services and operations
  • Automatically update the Website and Services on your device
  • Detect, investigate, and prevent activities that may violate our policies or be illegal
  • Perform statistical, demographic, and marketing analyses of users of the Website and Services

Combination of Your Personal Information

We use information from one portion of the Website and Services on other portions of Website and Services, all of which is owned and operated by LLS, and we may combine information gathered from multiple portions of the Website and Services into a single customer record. We also use and/or combine information that we collect off-line or we collect or receive from third party sources to enhance, expand, and check the accuracy of your customer records.

Use of Your Location Information

Specifically, we use your location information to:

  • Personalize content and experiences on our Website, including providing you recommendations based on your preferences
  • Optimize or improve our programs and operations
  • Detect, investigate, and prevent activities that may violate our policies or be illegal
  • Perform statistical, demographic, and marketing analyses of users of the Website and their use patterns

Who Do We Provide Your Information To?

Except as disclosed in this Privacy Policy or as separately agreed by you, we do not disclose information about your Personal Information collected online to any companies not part of the LLS or its subsidiaries or related entities. Although, as disclosed below, we may provide your information to our partners, in no event will we sell or rent your Personal Information as part of a customer list or similar transaction.

Third-Party Agents

We have third party agents, subsidiaries, affiliates and partners that perform functions on our behalf, such as hosting, storage, bandwidth, analytics, customer service, fraud protection, etc. These entities have access to the Personal Information needed to perform their functions and are contractually obligated to maintain the confidentiality and security of that Personal Information. They are restricted from using, selling, distributing or altering this data in any way other than to provide the requested services to the Website.

Business Partners and Third Parties

We may share your Personal Information with our business partners or co-marketers from time to time. We may also share your Personal Information with third parties that provide products and services that we think you may be interested in. Although our treatment of your Personal Information is governed by this Privacy Policy, the business partner or third party’s treatment of your Personal Information will be governed by the business partner or third party’s privacy policy. You may withdraw your consent to our sharing of your Personal Information with business partners and third parties at any time by following the opt-out process described below.

Emergency Situations

We may also use or disclose Personal Information if required to do so by law or in the good-faith belief that such action is necessary to (a) conform to applicable law or comply with legal process served on us or the Website or Services; (b) protect and defend our rights or property, the Website or our users, and (c) act under emergency circumstances to protect the personal safety of us, our affiliates, agents, or the users of the Website, Services or the public.

LLS E-mail and Text Communications

E-mail communications and text messages sent from LLS or through LLS are designed to make your Website and Services experience more efficient. By participating in the Website and Services, you may elect to receive e-mail communications and text messages initiated from LLS or through LLS, which include, without limitation: message notification e-mails, e-mails or text messages informing you of new and existing features on the Website or Services. Standard text messaging charges applied by your cell phone carrier will apply to text messages we send. If you change your mobile phone service provider, the notification service may be deactivated for your phone number and you may need to re-enroll in the notification service. LLS reserves the right to cancel the notification service at any time.

Use of Non-Personal Information

We may disclose or share Non-Personal Information (or other information, other than Personal Information) in any other manner that we deem appropriate or necessary. Among other things, we will disclose Non-Personal Information to third parties to help us determine how people use parts of the Website and who our users are so we can improve our Website and Services. We will also disclose Non-Personal Information to our partners and other third parties about how our users collectively use the Website and Services.

What Steps Are Taken To Keep Personal Information Secure?

We are concerned about ensuring the security of your Personal Information. We exercise great care in providing secure transmission of your information from your device to our servers. Personal Information collected by our Website are stored in secure operating environments that are not available to the public. Our security procedures mean that we may occasionally request proof of identity before we disclose your Personal Information to you. Please understand, however, that while we try our best to safeguard your Personal Information once we receive it, no transmission of data over the Internet or any other public network can be guaranteed to be 100% secure.

What Happens When I Link To or From Another Website?

The Website and Services may contain links to other websites operated by affiliates of LLS or third parties. Please be advised that the practices described in this Privacy Policy do not apply to information gathered through these other websites. We are not responsible for the actions and privacy policies of third parties and other websites.

How Can We Transfer Your Personal Information?

Your information collected through the Website and Services may be stored and processed in the United States or any other country in which LLS or its service providers maintain facilities. LLS or its service providers may transfer information that we collect about you, including personal information across borders and from your country or jurisdiction to other countries or jurisdictions around the world. If you are located in the United States or other regions with laws governing data collection and use that may differ from U.S. law, please note that we may transfer information, including personal information, to a country and jurisdiction that does not have the same data protection laws as your jurisdiction. By registering for and using the Website and Services, you consent to the transfer of information to the U.S. or to any other country in which LLS or its service providers maintain facilities and the use and disclosure of information about you as described in this Privacy Policy

How Long Do We Keep Your Information?

Following termination or deactivation of your account, LLS or its service providers may retain information (including your profile information) and your submissions to community forums, including for backup, archival, and/or audit purposes. LLS may continue to use and display your submissions to community forums. If you have any questions about termination or deactivation of your account, please contact us directly at

Governing Law

The Website and Services are published in the United States. We attempt to protect the Personal Information of all users of our Website and Services and we attempt to comply with local data protection and consumer rights laws to the extent they may apply to the Website and Services, but the Website and Services are located and targeted to United States citizens and our policies are directed at compliance with those laws. If you are uncertain whether this privacy policy conflicts with the applicable local privacy laws where you are located, you should not submit your Personal Information to LLS.


We may change our ownership or corporate organization while providing the Website and Services. We may also sell certain assets associated with the Website. As a result, please be aware that in such event we may transfer some or all of your information to a company acquiring all or part of our assets or to another company with which we have merged. Under such circumstances we would, to the extent possible, require the acquiring party to follow the practices described in this Privacy Policy, as it may be amended from time to time. Nevertheless, we cannot promise that an acquiring company or the merged company will have the same privacy practices or treat your information the same as described in this Privacy Policy.

Changes to This Policy

As our Website and Services continue to develop, we may add new services and features to our Website and Services. In the event that these additions affect our Privacy Policy, this document will be updated appropriately. We will post those changes prominently so that you will always know what information we gather, how we might use that information and whether we will disclose it to anyone. We do, however, recommend that you read this Privacy Policy each time you use our Website and Services in case you missed our notice of changes to the Privacy Policy. We will not, however, materially change our policies and practices to make them less protective of Personal Information we have previously collected from you without your express consent.

How Do I Opt-Out or Correct Information About Me

You may always opt-out of receiving future e-mail messages and newsletters from LLS. We provide you with the opportunity to opt-out of receiving communications from us by going into your profile settings and choosing the appropriate options. You may also correct information in your profile by going into your profile and updating your information. To opt-out, you can also send us a message at Please note, however, that you generally cannot opt-out of service related announcements, e.g. if the Website or Services is temporarily suspended or delayed.

Your California Privacy Rights

California Civil Code Section 1798.83 permits customers of LLS who are California residents to request certain information regarding its disclosure of their personal information to third parties for their direct marketing purposes. To make such a request, please send an e-mail to Website and Services will respect your browser’s Do Not Track signals (or other well-established, commercially available mechanisms that provide you with the ability to exercise choice regarding the collection of Personal Information). If we receive a Do Not Track notice, we will stop using any Personal Information for online behavioral advertising purposes.