OSI Website
Privacy Policy

Your privacy is important to the Osteosarcoma Institute and all other affiliated entities (“OSI” or “we”), and we know that you care about how your personal information is used and shared.

This Privacy Policy, as part of our Terms of Use, explains what information we gather about you, how we use it, how you can access it and the safeguards we have in place to protect it. Please read this Privacy Policy carefully before using this website and related webpages (collectively, the “Site”). By accessing or using this Site, you agree to this Privacy Policy. If you do not agree with our policies and practices, you may not use the Site. THE SITE IS OPERATED IN THE UNITED STATES AND IS INTENDED FOR USERS LOCATED IN THE UNITED STATES.

Contact Information
Should you have any questions about our Site or this Privacy Policy, contact us at:
Phone: 972.903.8408
E-Mail: admin@osinst.org

Scope of this Privacy Policy
This policy applies to information we collect:
• On our Sites: osinst.org and all related subdomains; and
• In email, text and other electronic messages between you and the Site.
This policy does not apply to information collected by:
• OSI offline or through any other means; including on any other website operated by any third party.
• Information you may provide OSI under a separate form of consent, such as consent in connection with OSI’s Share My Story or OSI Connect programs; or any third party, including through any application or content that may link to or be accessible from or on our Site.

Collection of Information
Personal Information
In the course of using this Site, OSI may ask you for certain information, including, but not limited to, your name, email address, postal address and telephone number, demographic information, information regarding your medical history, other individually identifiable information under applicable law (any of which is referred to as “Personal Information” for the purposes of this Privacy Policy). Generally, such information is provided voluntarily and knowingly. You can visit our Site without registering or providing us with any medical history information; however, you must provide Personal Information in order to receive communications or certain condition-related information from OSI, and/or access certain portions of the Site. OSI also actively and passively gathers, analyzes and/or stores some Personal Information and other information through various other sources and methods, including without limitation, online and mobile tracking gathered when you visit the Site through mechanisms that identify site usage, browser types, IP addresses and other usage information as set forth below. An IP address is a number that is assigned to your computer or network when you are linked to the Internet. When you request pages from this Site, our servers log your IP address. We may use IP addresses for a number of purposes, such as system administration, to report aggregate information or to audit the use of the Site. We may associate your IP address with the Personal Information you provide.

Cookies and Tracking Technologies
When your computer or mobile device contacts our web servers (for example, when you visit this Site, or view an HTML e-mail), our web servers automatically collect usage information (“Usage Information”). Such usage information includes information about how our visitors use and navigate our Site. It can include aggregate information such as the number and frequency of visitors to each page and the length of their stays, browser type and referrer data that identifies the web page visited prior and subsequent to visiting our Site. We also may determine the applicable technology available in order to serve you the most appropriate version of the Site, a web page, e-mail or similar service.

OSI may use cookies and other tracking technologies to collect Usage Information about Site visitors. A cookie is a very small text file placed on the hard drive of your computer. OSI may use tracking tools, including without limitation, cookies in order to improve the Site by providing aggregate information on the number of visitors and usage patterns and allowing us to recognize you when you revisit the Site to provide you with customized information and to remember your preferences.

OSI does not engage in the collection of Personal Information over time and across third-party websites, and we do not permit third parties to gather information passively on our Sites for behavioral advertising purposes.

You can control many tracking tools, including cookies. In particular, you may refuse to accept browser cookies by activating the appropriate setting on your browser. However, if you select this setting, you may be unable to access certain parts of our Site. Unless you have adjusted your browser setting so that it will refuse cookies, our system will issue cookies when you direct your browser to our Site. Additionally, some browsers have a ‘do not track’ feature that lets you tell websites that you do not want to have your online activities tracked. These features are not yet consistent or uniform, so we are currently not set up to respond to those signals.

How We Use the Information We Collect
OSI uses Usage Information to analyze and improve this Site and to provide you with a more fulfilling and relevant experience. OSI shall own non-personal Usage Information and may maintain copies of such as part of its records indefinitely.

Except as otherwise indicated, OSI may use the Personal Information that is provided by you: (a) to provide you with information that you request from us; (b) to fulfill the purpose for which you provide it; (c) to respond to inquiries or questions about OSI, including but not limited to our programs and services; (d) in any other way we may describe when you provide the information; (e) for internal marketing purposes; (f) to provide you with additional and updated information and materials regarding OSI’s programs and services; (g) to protect the rights of other users of this Site; (h) to cooperate with government officials or parties in litigation under process of law, or as otherwise required by law; (i) to protect the security or integrity of the Site; (j) to protect against a threat of safety or destruction of property; (k) to protect against legal liability and/or (l) for any other purpose with your consent. In all cases, however, OSI agents, employees and contractors who have access to Personal Information are required to protect this information in a manner that is consistent with this Privacy Policy. OSI will not use the Personal Information for any other purposes not herein without your express authorized permission; provided, however, OSI shall own all such Personal Information and maintain copies of such as part of its records for so long as such information is necessary or useful for the purpose provided.

OSI Connect
The Site may offer access to OSI Connect for patients who have been diagnosed with osteosarcoma or suffered a relapse after initial treatment. This resource is designed to help patients, families and caregivers find answers to their questions from experienced, knowledgeable osteosarcoma experts about all aspects of the disease, including available treatments and possible side effects, as well as helpful advice for getting the most out of your visits with your treating physician.

A member of the OSI staff will answer your call or email and, on a confidential basis, gather your information and questions for review by one of the sarcoma experts who serves on our board. After this review, we will arrange a phone call between you and the expert.

OSI Connect provides general guidance about the treatment of osteosarcoma. We can provide referrals for care if you wish. We do not provide medical care or specific medical advice.

The information that you provide through OSI Connect is voluntary. If you choose to provide personal information or personal health information, the information you provide will only be used by OSI to provide you with resources that you request through OSI Connect and will not be shared with any third party other than third party analytics firms whose use is limited to providing OSI with data analysis. The analyzed data may be shared with third parties after it has been anonymized by or on behalf of OSI.

Sharing Your Information
We may provide information to select outside companies when you request for us to do so or when we believe their products or services may be of interest to you. If you opt in to receive communications from a third party, your information will be subject to the third party’s privacy policy and not this Privacy Policy. Therefore, if you later decide that you do not want that third party to use your information, you will need to contact the third party directly. In addition, OSI may share your Personal Identifiable Information (“PII”) with third parties under the following circumstances:
• To contractors, service providers and other third parties we use to support OSI and who are bound by contractual obligations to keep Personal Information confidential and use it only for the purposes for which we disclose it to them. Examples of these services include: (a) content providers and technology plug-ins (including third party video and other media players); (b) product customization, (c) marketing and promotional material distribution, (d) website evaluation, (e) data collection, storage, management, analysis and, where applicable, cleansing, and (f) any other services designed to assist us in achieving our mission. These third parties may have access to this Site’s user information, including Personal Identifiable Information, to the extent it is needed to perform their duties and functions.
• To a successor in the event of a merger, divestiture, restructuring, reorganization, dissolution, or other sale or transfer of some or all of OSI’s assets, whether as a going concern or as part of bankruptcy, liquidation, or similar proceeding, in which Personal Information held by OSI about our Site users, donors, or clients is among the assets transferred.
• To fulfill the purpose for which you provide it or otherwise with your consent.
• For any other purpose disclosed by us when you provide the information.
• To our affiliates.
• To comply with any court order, law, or legal process, including to respond to any government or regulatory request.
• To enforce or apply our terms of use and other agreements.
• If we believe disclosure is necessary or appropriate to protect the rights, property, or safety of OSI, our grantees, or others.
We may disclose aggregated, non-personal Usage Information about our users without restriction.

Opt-Out of the Access to Personal Information
If you do not wish to have your Personal Information used by OSI as noted above, please notify OSI directly at admin@osinst.org. Notwithstanding the foregoing, OSI may be required to use your Personal Information to complete transactions requested by you or to cooperate with government officials or parties in litigation under process of law, or as otherwise required by law and/or to protect against legal liability.

Please note that the limitations on OSI’s use of Personal Information and Usage Information as set forth above do not apply in the event of a transfer of OSI’s assets, and Usage Information and Personal Information owned or in the possession of OSI may be transferred, distributed, or sold as part of OSI or its assets, except as prohibited by law. In addition, we may not accommodate a request to change information if we believe the change would violate any law or legal requirement or cause the information to be incorrect or if the identity of the requesting party cannot be verified.

Accessing and Correcting Your Information
Site users may request access to review or modify their Personal Information maintained by OSI by contacting us at admin@osinst.org. We may not accommodate a request to change information if we believe the change would violate any law or legal requirement or cause the information to be incorrect or if the identity of the requesting party cannot be verified.

Information Security
OSI has implemented security measures to help protect against the risk of loss, misuse, and alteration of any Usage Information or Personal Information under OSI’s control. Nevertheless, such security measures may not prevent all loss, misuse, or alteration of information on the Site, and OSI is not responsible for any damages or liabilities relating to any such security failures. By using this Site, you understand that there is a risk that data and communications, including email and other electronic communications, may be accessed by unauthorized third parties when communicated over the Internet. The foregoing does not affect any liability that cannot be excluded or limited under applicable law.

Your California Privacy Rights
Under California law, a California resident with whom OSI has an established relationship has the right to request certain information with respect to the types of personal information OSI has shared with third parties for their direct marketing purposes (if any), and the identities of those third parties, within the immediately preceding calendar year, subject to certain exceptions. In response to a written request, OSI is allowed to provide a cost-free means to opt-out of such sharing.

Since OSI does not provide your Personal Information to third parties for their direct marketing purposes, it is not necessary for us to establish this procedure; however, if you do not want OSI to use your Personal Information to provide information about our programs, please follow the cost-free opt-out procedures in this policy.

Site Location; Transfer of Information to the United States
The Site is operated in the United States and is intended for users located in the United States. If you are located outside the United States, please be aware that information we collect, including Personal Information, may be transferred to, processed, and stored in the United States. By using the Site or providing us with any information, you consent to the transfer, processing, and storage of your information in the United States. This Privacy Policy, including all revisions and amendments thereto, is governed by the internal laws of the United States, State of Texas, without regard to its conflict or choice of law principles that would require application of the laws of another jurisdiction.

Information of Children
Our Site is not directed to children under the age of 13 years. We will not request personally identifiable information from anyone whom we know to be under the age of 13. By using our Site, you represent and warrant that you are at least 13 years old. If we become aware that a customer is under the age of 13 and has registered without prior verifiable parental consent, we will remove his or her Personal Information.

Links to Third-Party Websites
If any link is offered connecting to a third-party website, it is for the convenience of our Site visitors. The inclusion of any link does not imply endorsement by OSI of that website and is provided only for informational purposes. OSI reserves the right to remove any link for any reason. Websites linked to and from this Site are not necessarily under the control of OSI, and OSI shall have no responsibility or liability whatsoever for the content or privacy practices of any such linked website or any link or linking program at any time. If you click on a link from our Site and link to a third party’s website, then this Privacy Policy will not apply to your Personal Information collected on that third party’s website and you must read the privacy policy on that website to see how your information will be handled.

Changes to our Privacy Policy
OSI may change this Privacy Policy at any time by posting the changed or amended Privacy Policy on the Site. Your continued viewing of or use of this Site following the posting of any changes to this Privacy Policy will indicate your assent to any such changes or amendments.

Nevada Privacy Rights
Nevada residents may opt out of the sale of their covered information, as those terms are defined in Nevada law, by submitting such request to our designated email address: admin@osinst.org; however, please note that we do not sell your covered information as defined by Nevada law.

Last Updated: June 21, 2022