Osteosarcoma Information Hotline
Notice of Privacy Practices


Our Responsibilities

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) requires health care providers and health plans (“Covered Entities”) to maintain the privacy and security of individuals’ protected health information, or “PHI.” The Osteosarcoma Institute (“OSI”) is incorporated in Texas and subject to the Texas Medical Records Privacy Act, which adopts the basic tenets of HIPAA, but provides more protection for patient privacy than is provided under HIPAA, including expanding the definition of Covered Entity to include “any person who engages in the practice of assembling, collecting, analyzing, using, evaluating, storing, or transmitting PHI”. Therefore, although OSI is not a Covered Entity under HIPAA, we are under state law, and are responsible for complying with HIPAA. As such:


  • We must follow the duties and privacy practices described in this Notice and give you a copy of it.
  • We will not use or share your information other than as described here unless you tell us we can in writing. If you tell us we can, you may change your mind at any time. Let us know in writing if you change your mind.
  • We will let you know promptly if a breach occurs that may have compromised the privacy or security of your information.

Our Uses and Disclosures

We typically use or share your health information in the following ways:

To help advise you regarding health care options that may be available to you

We share the PHI you provide us with professionals we have designated to answer your questions and advise you. These professionals are experienced osteosarcoma specialist physicians who are officers of OSI or members of the OSI Executive Institute Board or Scientific Advisory Board.

Example: Information about the patient’s medical conditions, history and care is only used as reasonably necessary to process your Osteosarcoma Information Hotline request and to provide you with counseling or health consulting service. Unless you request otherwise, this may include require communication between OSI and your treating physicians, clinical trial sponsors, and other providers necessary to verify details regarding your medical information and determine the type of services you need or that OSI can refer you to.

To run our organization

We can use your PHI to run our organization and contact you when necessary.

How else can we use or share your health information?

We can be compelled to share your PHI in other ways – usually in ways that contribute to the public good, such as public health.  We have to meet many conditions in the law before we share your information for these purposes. For more information, see: www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html

To help with public health and safety issues

We may be required to share PHI for certain situations such as:

  • Helping with product recalls
  • Reporting suspected abuse, neglect, or domestic violence
  • Preventing or reducing a serious threat to anyone’s health or safety

To comply with law enforcement, and other government requests

We may be required to share your PHI:

  • For law enforcement purposes or with a law enforcement official
  • With health oversight agencies for activities authorized by law

    Example: We will share PHI with the Department of Health and Human Services if it requests it to see that we are complying with federal privacy law.

  • For special government functions such as military, national security, and presidential protective services

To respond to lawsuits and legal actions

We must share your PHI in response to a court or administrative order, or in response to a subpoena.

Your Choices.

  • For certain health information (e.g.; understanding your insurance coverage), you can tell us your choices about the way we use and share your PHI.
  • For marketing and sales purposes, we never share your information.

Your Rights.

Your rights with respect to PHI include:

  • The right to request restrictions on certain uses and disclosures of PHI.
  • The right to receive confidential communications of PHI, as permitted by law.
  • The right to inspect and copy PHI.
  • The right to amend PHI, as permitted by law.
  • The right to receive an accounting of disclosures of PHI.
  • The right to obtain a paper copy of this notice, upon request.
  • The right to complain to OSI by emailing admin@osinst.org, and to the Secretary of Health and Human Services if you believe your privacy rights have been violated. You can file a complaint with the U.S. Department of Health and Human Services Office for Civil Rights by sending a letter to 200 Independence Avenue, S.W., Washington, D.C. 20201, calling 1-877-696-6775, or visiting hhs.gov/ocr/privacy/hipaa/complaints/. We will not retaliate against you for filing a complaint.

For questions or clarification about the Notice, please contact  us at admin@osinst.org.

Notice of Referral Services

Through the Osteosarcoma Information Hotline, physicians who are officers of OSI or on the OSI Institute Executive Board or Scientific Advisory Board speak to or otherwise communicate with patients (and/or their family members, since the patients are often children) to provide high-quality information and lay out choices, but they do not provide medical advice.  To the extent the choices the physicians discuss with families include recommendations of or referrals to osteosarcoma specialists who may provide medical advice or services to the patient, this notice is to explain that:

  • there are no membership or participation criteria for the providers to whom the Osteosarcoma Information Hotline physicians may refer;
  • similarly, these osteosarcoma specialists have not paid a fee to OSI or the Osteosarcoma Information Hotline physicians for any such recommendations or referrals;
  • any suggestions provided through the Hotline regarding particular osteosarcoma specialist(s) or institution(s) are based on factors such as geographic proximity to, and convenience for, the patient, a potentially appropriate clinical trial being conducted by the suggested physician or institution, or other non-financial considerations judged to be in the interest of the patient; and
  • any relationship between OSI and the providers to whom an Osteosarcoma Information Hotline physician may refer will be immediately disclosed to the family by that Osteosarcoma Information Hotline physician.

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 described below (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 admin@osinst.org.

Scope of this Privacy Policy

This policy applies to information we collect:

  • On our Sites: osteosarcoma.info, osinst.org, ConcentratingOnTheCure.com 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 by phone or on any other website operated by any third party; 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 by you 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 Site may log your IP address. We may use IP address 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.

The Osteosarcoma Information Hotline

The Site may offer access to an Osteosarcoma Information Hotline for patients (or their representatives) 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 their visits with their treating physician.

The information that you provide on the Hotline is voluntary. If you choose to provide personal health information, the information you provide will only be used by OSI to provide you with resources that you request through the Hotline and will not be shared with any third party. For more information on the Hotline and how information is used through the Hotline, please view the Hotline Notice of Privacy Practices.

Sharing Your Information

We may provide information to select outside companies when you authorize or request for us to do so.  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 information with third parties under the following circumstances:

  • To 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 PII, 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 controlled by OSI or under common control with OSI.
  • 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. However, in the event of such a transfer OSI will take steps to ensure that the buyer agrees to abide by the privacy obligations herein.

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 user 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: August 5, 2020

Copyright © 2020 Osteosarcoma Institute | Concentrating on the Cure

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Copyright © 2020 Osteosarcoma Institute | Concentrating on the Cure

Site designed by TFLEM Studio