Chordoma Foundation Online Community Terms of Use
SUMMARY
Please read these Chordoma Foundation Online Community Terms of Use (“Terms”) carefully before using the Chordoma Foundation Online Community. Below is a summary of the Terms. This summary is provided for your convenience only and has no contractual or legal effect. Please see the full Terms below for the complete Terms.
These Terms incorporate by reference the Chordoma Foundation’s Privacy Policy, available at https://www.chordomafoundation.org/privacy-policy/, the Chordoma Foundation’s general Terms of Use, available at http://www.chordomafoundation.org/terms-of-use, and the Chordoma Connections Community Guidelines, available at https://chordoma-connections.org/page/community-guidelines.
Your Account
You must be over 18 years old or have the permission of a parent or guardian to create an account or use the Chordoma Foundation Online Community. You may not use the Chordoma Foundation Online Community if you are under 13 years old.
The Chordoma Foundation has the right to monitor your conduct on the Chordoma Foundation Online Community and terminate your user account for any reason.
You are responsible for your log-in credentials and for keeping your information accurate.
You are responsible for any activity resulting from the use of your log-in credentials on the Chordoma Foundation Online Community.
If you do not act acceptably and follow the Terms or the Chordoma Connections Community Guidelines, the Chordoma Foundation may close your account and prohibit your use of the Chordoma Foundation Online Community.
Communications
By registering for an account in the Chordoma Foundation Online Community, you consent to the Chordoma Foundation communicating with you by email or posting notice on or through the Chordoma Foundation Online Community.
Use of the Chordoma Foundation Online Community
You may only use the Chordoma Foundation Online Community for non-commercial purposes.
You agree and acknowledge that your participation in the Chordoma Foundation Online Community does not make you a patient or client of the Chordoma Foundation or the Chordoma Foundation Online Community. Further, the Chordoma Foundation does not access or use any protected health information as a part of the Chordoma Foundation Online Community, and therefore does not have any HIPAA-compliance obligations.
The Chordoma Foundation Online Community contains educational information only.
You are fully responsible for your actions when using the Chordoma Foundation Online Community and the information obtained through the Chordoma Foundation Online Community.
The Chordoma Foundation does not screen users and is not responsible for the conduct of users.
Carefully consider what you post to the Chordoma Foundation Online Community and make available to other users. Another user could use the information you post to the public areas of the Chordoma Foundation Online Community in a negative manner. View how the Chordoma Foundation uses and discloses the information we collect in our Privacy Policy, available at http://www.chordomafoundation.org/privacy-policy.
You agree to keep any personal information that you view and/or receive through the Chordoma Foundation Online Community confidential.
You agree not to post negative information about health care professionals in the Chordoma Foundation Online Community.
You agree to follow the Chordoma Connections Community Guidelines listed in the Terms at all times. Failure to do so may lead to termination of your right to access and/or participate in the Chordoma Foundation Online Community.
Ownership and License
The Chordoma Foundation owns or has rights to all of the content we make available through the Chordoma Foundation Online Community. You may use the content for non-commercial purposes as you use the Chordoma Foundation Online Community. You cannot use the Chordoma Foundation logo or the Chordoma Foundation Online Community logo without the Foundation’s written permission.
You consent to the Chordoma Foundation’s use of anonymized and aggregated data about Chordoma Foundation Online Community users and the actions taken by users within the community.
You must obtain prior written consent to use or post other people’s content, or they may be able to bring claims against you for violating their legal rights.
You must promptly inform the Chordoma Foundation if you think a user violated your copyright within the Chordoma Foundation Online Community, or if you think someone incorrectly reported that you violated his or her copyright.
The Chordoma Foundation’s Liability
You use the Chordoma Foundation Online Community at your own risk. The Chordoma Foundation makes no warranties or guarantees.
Except as required by law, the Chordoma Foundation is not liable for the actions of users when they use the Chordoma Foundation Online Community.
The Chordoma Foundation may change the Chordoma Foundation Online Community at any time and you are responsible for understanding how these changes may impact you.
The Chordoma Foundation does not guarantee the quality or accuracy of any content you view using the Chordoma Foundation Online Community or other websites.
To the maximum extent permitted under applicable law, the Chordoma Foundation is not liable for anything that happens to you in connection with your use of the Chordoma Foundation Online Community. If you use the Chordoma Foundation Online Community in a way that causes the Chordoma Foundation to be included in legal actions, you agree to indemnify, defend and hold the Chordoma Foundation harmless for all legal fees and costs for the Chordoma Foundation and its affiliates, officers, employees, agents, partners, and/or licensors related to such action.
Disputes
The Chordoma Foundation is located in North Carolina, so all disputes must be resolved in North Carolina. The Chordoma Foundation will use arbitration to resolve any problems.
CHORDOMA FOUNDATION ONLINE COMMUNITY TERMS OF USE
Please read these Chordoma Foundation Online Community Terms of Use (“Terms”) carefully before using the Chordoma Foundation Online Community.
These terms incorporate by reference the Chordoma Foundation’s Privacy Policy, available at http://www.chordomafoundation.org/privacy-policy, the Chordoma Foundation’s general Terms of Use, available at http://www.chordomafoundation.org/terms-of-use, and the Chordoma Connections Community Guidelines, available at https://chordoma-connections.org/page/community-guidelines.
Introduction
The Terms create a legally binding contract between the Chordoma Foundation and you. It may change as business changes, and you agree you will review it and any updates regularly. You accept these Terms each time you access the Chordoma Foundation Online Community. If you do not accept these Terms, you cannot use the Chordoma Foundation Online Community.
Definitions
Binding Agreement
These Terms constitute the entire agreement between you and the Chordoma Foundation concerning your use of the Chordoma Foundation Online Community. The Chordoma Foundation’s failure to exercise or enforce any right or provision of these Terms shall not constitute a waiver of such right or provision. If any provision of these Terms is found by a court of competent jurisdiction to be invalid, the parties nevertheless agree that the court should endeavor to give effect to the parties’ intentions as reflected in the provision, and the other provisions of these Terms remain in full force and effect.
The section titles and annotations in these Terms are for convenience only and have no legal or contractual effect.
Revisions to Terms
The Chordoma Foundation may revise these Terms at any time by posting an updated version without notice to users. You should visit this page periodically to review the most current Terms, because you are bound by them. Your continued use of the Chordoma Foundation Online Community after a change to these Terms constitutes your binding acceptance of these Terms.
Use of the Chordoma Foundation Online Community
The Chordoma Foundation Online Community provides an online platform for interacting with other users and for accessing the information and interactive community services offered by the Chordoma Foundation.
Non-Commercial Use
You may use the Chordoma Foundation Online Community for non-commercial purposes only.
When you use the Chordoma Foundation Online Community, you agree not to do any of the following:
You shall not directly or indirectly disassemble, decompile, reverse engineer, replicate, or otherwise attempt to discover the whole or any part of the source code or system functionality associated with the Chordoma Foundation Online Community, whether to render the Chordoma Foundation Online Community inoperable with other computer programs or equipment or to reproduce the functionality of the whole or any part of the Chordoma Foundation Online Community, nor shall you assist any third party in doing any of the foregoing. The data feeds and other services exposed by the Chordoma Foundation Online Community are for the sole use of the Chordoma Foundation Online Community and the Chordoma Foundation. You shall not directly or indirectly use such data feeds or other services for any purpose not expressly described herein.
Contacting Chordoma Foundation Online Community Users for Media or Research Purposes
You may not contact Chordoma Foundation Online Community users for media or research purposes.
You may contact the Chordoma Foundation and request permission to inquire with Chordoma Foundation Online Community users regarding potential interest in a media interview or research study. Grant or denial of your request is in the sole discretion of the Chordoma Foundation. The Chordoma Foundation will not provide personal information of users in response to such requests without advance permission from the user.
For Educational and Informational Purposes Only
You assume full risk and responsibility for your use of information obtained through the Chordoma Foundation Online Community.
The Chordoma Foundation and the Chordoma Foundation Online Community provide information, not medical, legal, or psychological advice, diagnoses, or treatment. The Chordoma Foundation Online Community may provide helpful health-related information, but it is not intended to substitute for professional advice, diagnoses, or treatment, or your judgment.
Educational Information Only
You acknowledge that all of the information and content on the Chordoma Foundation Online Community is provided “as is” for educational and informational purposes only. To the maximum extent permitted under applicable law, you assume full risk and responsibility for the use of or reliance on information you obtain from or through the Chordoma Foundation Online Community or the Chordoma Foundation.
The Chordoma Foundation is Not Required to Comply with HIPAA
You understand and acknowledge that the Chordoma Foundation is NOT providing you with “covered health services” such as the term is defined in the Health Insurance Portability and Accountability Act (“HIPAA”). Any information that you provide to the Chordoma Foundation through the Chordoma Foundation Online Community will NOT be deemed in any way “protected health information,” and as such, the Chordoma Foundation shall NOT be obligated to handle that information in a manner required by HIPAA. You acknowledge and agree that you will never assert against the Chordoma Foundation any claims arising under HIPAA.
No Patient or Client Relationship
You understand and acknowledge that you are not a patient or client of the Chordoma Foundation or the Chordoma Foundation Online Community.
Your use of the Chordoma Foundation Online Community does not create a patient or client relationship with the Chordoma Foundation. You should consult with qualified health professionals who are familiar with your individual medical needs concerning your specific medical issues.
Never disregard professional advice or delay in seeking it because of information you read on the Chordoma Foundation Online Community or the Chordoma Foundation website.
If you think you may have a medical emergency, call your doctor or 911 immediately.
We do not recommend or endorse any provider of health care or health-related products, tests, opinions, procedures, items, or services.
User Content
You are responsible for your actions when using and relying on the Chordoma Foundation Online Community.
The Chordoma Foundation does not endorse or represent or guarantee the truthfulness, accuracy, or reliability of user content. You accept that any reliance on material posted by other users or third-party service providers will be at your own risk. By using the Chordoma Foundation Online Community you accept the risk that you might be exposed to content that is objectionable or otherwise inappropriate.
To the maximum extent permitted under applicable law, you assume all risks associated with your user content, including anyone’s reliance on its quality, accuracy, or reliability. You may expose yourself to liability, if, for example, your user content contains material that is false, intentionally misleading, or defamatory; violates third-party rights; or contains material that is unlawful or advocates the violation of any law or regulation.
No User Screening
The Chordoma Foundation is not responsible for screening users or verifying profile information provided through the Chordoma Foundation Online Community. The Chordoma Foundation is not responsible for the conduct of users of the Chordoma Foundation Online Community, including the content of messages posted by users. Contact the Chordoma Foundation to notify us of inappropriate or illegal conduct or content you encounter on the Chordoma Foundation.
Monitoring and Termination of Users
The Chordoma Foundation has the right to monitor user activities and information.
The Chordoma Foundation has the right to, in its sole discretion, terminate a user account and/or remove content for any reason or no reason.
Public Areas of the Chordoma Foundation Online Community Are Not Private
Carefully consider what you post to the Chordoma Foundation Online Community and make available to other users. Another user could use the information you post to the public areas of the Chordoma Foundation Online Community in a negative manner.
These Terms and the Privacy Policy apply to all user data in the Chordoma Foundation Online Community, including any data files you obtain from your healthcare provider and post or send through the Chordoma Foundation Online Community.
Information you post to the public areas of the Chordoma Foundation Online Community may be accessed or viewed by other users. You agree that you will not post to any public areas of the Chordoma Foundation Online Community any information you would not want to be publicly available. We urge you to carefully consider potential consequences of posting information on public areas of the Chordoma Foundation Online Community prior to posting. For example, employers, insurance companies, or others may discriminate based on health information.
Information About Others
You must keep personal information you receive through the Chordoma Foundation Online Community confidential, including personal information related to other users, and you agree not to give such information to anyone without prior written permission from the person who provided it to you.
You agree not to post negative information about health care professionals, including information related to your interactions with them.
Eligibility to Use the Chordoma Foundation Online Community
You must be over 18 years old or have the permission of a parent or guardian to use the Chordoma Foundation Online Community. If you are under 18 years of age, you represent and agree that you possess the legal consent of your parent or guardian to access and use the Chordoma Foundation Online Community. You may not use the Chordoma Foundation Online Community if you are under 13 years old. No part of the Chordoma Foundation Online Community is directed to persons under the age of 13.
Your Account
You are responsible for your log-in credentials and for keeping your information accurate. You are responsible for any activity resulting from the use of your log-in credentials on the Chordoma Foundation Online Community. Your account is personal to you, and you may not share your account information with, or allow access to your account by, any third party. You agree to use reasonable efforts to prevent unauthorized access or use of the Chordoma Foundation Online Community and to preserve the confidentiality of your log-in credentials, and any device you use to access the Chordoma Foundation Online Community.
You agree to contact the Chordoma Foundation if you have any reason to believe that your account information has been compromised or that your account has been accessed by a third party. You will be solely responsible for the losses incurred by the Chordoma Foundation and others due to any unauthorized use of your account.
Communications
The Chordoma Foundation may communicate with you by email or by posting notice on or through the Chordoma Foundation Online Community.
You agree to receive email from us at the email address you provided to us when creating your account.
Electronic Notices
By using the Chordoma Foundation Online Community and/or providing personal information to the Chordoma Foundation in any manner, you agree that we may communicate with you electronically regarding security, privacy, and administrative issues relating to your use of the Chordoma Foundation Online Community. If we learn of a security system’s breach, we may attempt to notify you electronically by posting a notice on or through the Chordoma Foundation Online Community or sending an email to you. You may have a legal right to receive the notice in writing. To receive free written notice of a security breach (or to withdraw your consent from receiving electronic notice), please notify the Chordoma Foundation in writing.
Licenses
All Chordoma Foundation content and the collection, arrangement, and assembly of Chordoma Foundation content are the property of the Chordoma Foundation or its licensors and are protected under copyright, trademark, and other laws.
License To You
We authorize you, subject to your continued compliance with all of these Terms, to access and use the Chordoma Foundation Online Community and the Chordoma Foundation content solely for personal use, at our discretion. Any other use is expressly prohibited. This license is revocable at any time without notice and with or without cause. Unauthorized use of Chordoma Foundation content may violate copyright, trademark, and applicable communications regulations and statutes and is strictly prohibited. You must preserve all copyright, trademarks, service marks, and other proprietary notices contained in the original Chordoma Foundation content on any copy you make of Chordoma Foundation content.
The Chordoma Foundation Marks
The Chordoma Foundation, the Chordoma Foundation logo, and other Chordoma Foundation logos and product and service names, including Chordoma Connections, are or may be trademarks of the Chordoma Foundation (the “Chordoma Foundation marks”). Without our prior written permission, you agree not to display or use in any manner the Chordoma Foundation marks.
Users Own Their Content
The Chordoma Foundation claims no ownership or control over your user content. You or a third-party licensor, as appropriate, retain all copyright, patent, and trademark rights to any of the content you post on or through the Chordoma Foundation Online Community. You are responsible for protecting those rights. The Chordoma Foundation reserves the right to refuse to accept, post, display, or transmit any user content in its sole discretion.
The Chordoma Foundation’s License to Your Content
By creating, posting, or sharing your user content on or through the Chordoma Foundation Online Community, and subject to the Chordoma Foundation’s Privacy Policy, you expressly grant the Chordoma Foundation a world-wide, non-exclusive, sub-licensable, royalty-free, transferable license to reproduce, distribute, publicly display, publicly perform, create derivative works of, and otherwise use, and modify your user content to provide the Site and services offered through the Site, and as otherwise contemplated by the Chordoma Foundation’s Privacy Policy. The Chordoma Foundation will not disclose your name or personally identifiable information about you to a third party for the third party’s marketing purposes without your written permission to do so.
You also grant each user of the Chordoma Foundation Online Community a non-exclusive license to access your user content through the Chordoma Foundation Online Community.
You Acquire No Ownership of Others’ Content
You understand and agree that you will not obtain, as a result of your use of the Chordoma Foundation Online Community, any right, title, or interest in or to such content delivered via the Chordoma Foundation Online Community or in any intellectual property rights (including, without limitation, any copyrights, patents, trademarks, trade secrets, or other rights) in the content.
The Chordoma Foundation Online Community contains content from users and other Chordoma Foundation licensors. You may not copy, modify, translate, publish, broadcast, transmit, distribute, perform, display, or sell any content appearing on or through the Chordoma Foundation Online Community.
You Must Have Rights to the Content You Post
You represent and warrant that:
You agree to pay all royalties, fees, and other monies owing any person by reason of content you post on or through the Chordoma Foundation Online Community.
Copyright Policy
The Digital Millennium Copyright Act of 1998 (the “DCMA”) provides recourse for copyright owners who believe that material appearing on the internet infringes their rights under U.S. Copyright Law.
If you believe in good faith a user violated your copyright using the Chordoma Foundation Online Community, or if you believe someone incorrectly reported that you violated his or her copyright, inform the Chordoma Foundation immediately in writing, requesting that the material be removed or access to it blocked. The written notice must include the following information:
The Chordoma Foundation’s copyright agent for notice claims of copyright infringement can be reached as follows:
Chordoma Foundation
Attn: Tammy Silverthorne
PO Box 2127
Durham, NC 27702
[email protected]
(919) 809-6779
If you believe in good faith that a notice of copyright infringement has been wrongly filed against you, the DCMA permits you to send the Chordoma Foundation a counter-notice.
Visit http://www.loc.gov/copyright for details on the current statutory requirements notice and counter-notices must meet. Consult your legal advisor and see 17 U.S.C. § 512 before filing a notice or counter-notice, as there are penalties for false DCMA claims.
Suggestions and Submissions
We appreciate hearing from our users and welcome your comments regarding the Chordoma Foundation Online Community. However, if you send us creative ideas, suggestions, inventions, or materials (“creative ideas”), the Chordoma Foundation shall:
Community Guidelines
You agree to use the Chordoma Foundation Online Community for its intended purpose. You must use the Chordoma Foundation Online Community in compliance with all applicable laws. Please also refer to the Chordoma Connections Community Guidelines, which are incorporated herein by reference.
The following uses of the Chordoma Foundation Online Community are prohibited. You may not:
Consequences of Violating These Terms
We may change, suspend, or discontinue any aspect of the Chordoma Foundation Online Community at any time, including hours of operation or availability of the Chordoma Foundation Online Community or any feature, without notice or liability.
The Chordoma Foundation reserves the right to suspend or terminate your account and/or prevent access in the future to the Chordoma Foundation Online Community at any reason or no reason, at our discretion, without notice or liability.
The Chordoma Foundation and its designees may review and remove any user content at any time for any reason, including for activity which, in its sole judgment: violates these Terms, violates applicable laws, rules, or regulations, is abusive, disruptive, offensive, or illegal; or violates the rights of, or harms and threatens the safety of, users of the Chordoma Foundation Online Community.
You are responsible for any claims, fees, fines, penalties, or other liability incurred by the Chordoma Foundation or others caused by or arising out of your breach of these Terms and your use of the Chordoma Foundation Online Community.
User Disputes
We are not responsible for any disputes or disagreements between you and any third party you interact with using the Chordoma Foundation Online Community. You assume all risk associated with dealing with third parties. You agree to resolve disputes directly with the other party. You release the Chordoma Foundation of all claims, demands, and damages in disputes among users of the Chordoma Foundation Online Community. You also agree not to involve the Chordoma Foundation in such disputes. Use caution and common sense when using the Chordoma Foundation Online Community.
Content Accuracy
We make no representations about accuracy, reliability, completeness, or timeliness of any contents of the Chordoma Foundation Online Community. We make no representations about accuracy, reliability, completeness, or timeliness of any data from a third-party service provider or the quality or nature of third-party products or services obtained through the Chordoma Foundation Online Community. Use the Chordoma Foundation Online Community at your own risk.
Third-Parties
The Chordoma Foundation Online Community may include links to third party websites and applications. You are responsible for evaluating whether you want to access or use them. We are not responsible for and do not endorse any features, content, advertising, products, or other materials on other websites or applications. You assume all risk and we disclaim all liability arising from your use of them.
The Chordoma Foundation Online Community may allow you to use the third-party content and functionality. You use such content and functionality subject to such third parties’ terms and conditions.
Disclaimer of Warranties
You use the Chordoma Foundation Online Community at your own risk. We make no warranties and guarantees.
You expressly understand and agree that:
Limitation of Liability and Indemnification
To the maximum extent permitted under applicable law, you expressly understand and agree that the released parties shall not be liable to you for any direct, indirect, incidental, special, consequential, or exemplary loss or damages, including, but not limited to, damages for loss of profits, goodwill, use, data or other intangible losses or personal injury or death (even if the Chordoma Foundation has been advised of the possibility of such damages), resulting from:
Some jurisdictions do not allow the exclusion of certain warranties or the limitation or exclusion of liability for incidental or consequential damages. Accordingly, some of the above limitations may not apply to you.
To the fullest extent permitted under applicable law, the released parties’ maximum liability arising out of or in connection with the Chordoma Foundation Online Community or your use of Chordoma Foundation content, regardless of the cause of action, will not exceed $100.
You agree to defend, indemnify, and hold harmless the released parties from and against any claims, actions, or demands, including without limitation reasonable legal and accounting fees, alleging or resulting from:
Arbitration, Class Waiver, and Waiver of Jury Trial
These terms and the relationship between you and the Chordoma Foundation shall be governed by the laws of the state of North Carolina without regard to its conflict of law provisions. You and the Chordoma Foundation agree to submit to the personal and exclusive arbitration of any disputes relating to your use of the Chordoma Foundation Online Community under the rules of the American Arbitration Association. Any such arbitration shall be conducted in North Carolina. You covenant not to sue the Chordoma Foundation in any other forum.
You also acknowledge and understand that, with respect to any dispute with the Released Parties arising out of or relating to your use of the Chordoma Foundation Online Community or these terms:
Effective Date: November 28, 2017
Last Updated: December 1, 2018
Privacy Policy
1. Scope of this Privacy Policy
This Privacy Policy describes the types of personal information Chordoma Foundation (“Chordoma Foundation,” “we,” “us,” or “our”) collects through www.chordomafoundation.org, www.chordomafoundation.com, and www.chordoma.org (collectively, the “Site”). This Privacy Policy does not govern our collection of personal information through any website or other means, other than through the Site.
Our processing of personal information, such as the name, address, e-mail address, or telephone number, shall be undertaken consistent with the requirements of the General Data Protection Regulation (“GDPR”). The purpose of this Privacy Policy is to provide to users and potential users of our website information about the nature, scope, and purpose of the personal information we collect, use and process and to advise data subjects of their rights. Whether as the data controller or processor, Chordoma Foundation has implemented numerous technical and organizational measures to ensure the protection of personal information processed through this website. However, Internet-based data transmissions may in principle have security gaps, so absolute protection may not be guaranteed.
By using the Site, you accept and consent to our practices surrounding the collection, use, and sharing of personal information provided by you in the manner described in this Privacy Policy. If you do not agree with the terms of this Privacy Policy, you cannot access, browse, or use the Site.
2. Personal Information We Collect
A. Actively Collected Information
This Site offers Site users the ability to learn about Chordoma Foundation and to contribute to Chordoma Foundation research and other supportive causes, for example, by donating individually, creating a fundraising team, joining an existing fundraising team, creating a “Champion” or “Team” page, and supporting a “Champion.” While you do not have to give us any personal information to browse this Site, you may be asked to provide personal information if you wish to register as a user, to submit information to us, or to use the services offered through this Site, and by doing so, you consent to our processing of such information as described in this Privacy Policy. This information may include your full name, e-mail address, postal address, other demographic information, location, photographs, videos, your relationship to chordoma (for example, as a patient, family member of a patient, or clinician/researcher), and any other information you voluntarily provide. We may also collect your email address if you communicate with us by email. Once you provide us with personal information about you, you are no longer anonymous to us.
In order to donate to Chordoma Foundation through the Site, you will be required to provide us with the following personal information about you: full name, billing address, e-mail address, telephone number, credit/debit card number, credit/debit card expiration date, credit/debit card CVV number, credit/debit card type (Visa, MasterCard, Discover, or American Express), and such other financial information necessary to process your payments. You will also be asked to indicate whether your employer will match your donation, whether your current estate plan provides for Chordoma Foundation, and your relationship to chordoma (for example, as a patient, family member of a patient, or clinician/researcher).
B. Passively Collected Information
In order to access and use certain areas or features of the Site, you consent to our collection of certain information about your use of the Site through the use of tracking technologies or by other passive means, including the use of Google Analytics or similar programs to help us collect and analyze this information. You consent to our access and use of this type of “passively collected” information, including, but not limited to, the domain name of the website that allowed you to navigate to the Site, search engines used, the internet protocol (IP) address used, the length of time spent on the Site, the pages you looked at on the Site, other websites you visited before and after visiting or accessing the Site, the type of internet browser you have, the frequency of your visits to the Site, and other relevant statistics, including the following:
3. How We Use Personal Information
Chordoma Foundation complies with its obligations under GDPR by: keeping personal information up to date where needed based on the purposes for which the personal information is being processed; by not collecting or retaining excessive amounts of data; by ensuring that appropriate technical measures are in place to protect personal information from loss, alteration, misuse, unauthorized access and disclosure as it is transmitted, stored, or otherwise processed, and by using appropriate measures to securely destroy personal information when it is no longer needed by Chordoma Foundation.
You consent to our use of the personal information collected through the Site by Chordoma Foundation and its affiliates for purposes of:
4. Personal Information We Share
We do not sell, rent, trade, or otherwise share personal information collected through the Site, except as described below:
5. Aggregate Information
We may compile de-identified personal information and other information collected through the Site on an aggregate basis. This information may include, without limitation, demographic information about users of the Site. Such aggregate information does not identify you individually. We may use aggregate information and share aggregate information with third parties for any of the purposes specified above in this Privacy Policy, or for any other lawful purpose.
6. Your Choices
You can always choose whether or not to provide information through the Site. However, if you choose not to disclose certain information, your access to certain portions of the Site may be limited.
Our Site does not honor “do not track” signals or other mechanisms. As described in more detail below, you can configure your browser not to accept cookies or to notify you when a cookie is being sent.
The Site provides users the opportunity to upload information through “Champion” and “Team” pages. You acknowledge and agree that any information that you choose to upload through a Champion or Team page will become public information. This information may include your name, photographs, videos, and any other information you voluntarily provide. You are solely responsible for the content of any such information you choose to upload to the Site, and you can always choose whether or not to provide information through a Champion or Team page. All information that is uploaded through a Champion or Team page may be viewed by other users of the Site and the general public (for example, through the use of Internet search engines or other Internet applications). Because information that may be uploaded through Champion and Team pages may consist of sensitive health information, we urge you to carefully consider whether or not to upload such information, keeping in mind that once uploaded, this information may be viewed by any member of the public.
The Site provides users the opportunity to create a user profile in the Chordoma Foundation online community, Chordoma Connections. You acknowledge and agree that any information that you choose to add to your profile or upload to the Chordoma Connections section of the Site will become available to other users within Chordoma Connections. This information may include your name, photographs, videos, and any other information you voluntarily provide. You are solely responsible for the content of any such information you choose to upload to Chordoma Connections, and you can always choose whether or not to provide information through your profile page and to discussion topics within Chordoma Connections. All information that is uploaded to a profile page or discussion topics may be viewed by other users of Chordoma Connections, but is not viewable by the general public. Because information that may be uploaded to a profile or discussion topics may consist of sensitive health information, we urge you to carefully consider whether or not to upload such information, keeping in mind that once uploaded, this information may be viewed by other users.
If at any time you decide that you no longer wish to receive notices from us regarding the Site, you may indicate this preference by sending us an email at [email protected] or sending a letter via U.S. mail to:
Chordoma Foundation
Post Office Box 2127
Durham, North Carolina 27702
We encourage registered users of the Site to keep their personal information current. You may request to change personal information you have provided about you by sending us an email at [email protected] or sending a letter via U.S. mail to:
Chordoma Foundation
Post Office Box 2127
Durham, North Carolina 27702
If you are an EU resident, by law you may have the following rights with respect to your personal information:
If you want to exercise any of the rights described above, please contact us using the contact details below.
Typically, you will not have to pay a fee to access your personal information (or to exercise any of the other rights). However, except in relation to Consent Withdrawal, we may charge a reasonable fee if your request is clearly unfounded, repetitive or excessive, or, we may refuse to comply with your request in these circumstances.
We may need to request specific information from you to help us confirm your identity and ensure your right to access your personal information (or to exercise any of your other rights). This is a security measure to ensure that personal information is not disclosed to any person who has no right to receive it. We may also contact you to ask you for further information in relation to your request to speed up our response.
We try to respond to all legitimate requests within one month. Occasionally it may take us longer than a month if your request is particularly complex or you have made a number of requests. In this case, we will notify you and keep you updated.
Chordoma Foundation will transfer personal information abroad only when there has been a documented adequacy determination, or where Chordoma Foundation has confirmed adequate privacy protections. If Chordoma Foundation transfers personal information to a third party acting as an agent of Chordoma Foundation, we will also require the third party to have adequate privacy protections in place.
Chordoma Foundation may transfer personal information to and on behalf of clients and third party’s with whom Chordoma Foundation has an existing service agreement or as part of our legal obligations, each of which shall be subject to Chordoma Foundation policies, and only to the extent necessary for purposes of legitimate interests pursued by the data controller (or by a third party).
Under GDPR, data subjects shall have the right not to be subject to a decision based solely on automated processing, including profiling, which produces legal effects concerning him or her, or similarly significantly affects him or her, as long as the decision (1) is not necessary for entering into, or the performance of, a contract between the data subject and a data controller, or (2) is not authorized by Union or Member State law to which the controller is subject and which also lays down suitable measures to safeguard the data subject’s rights and freedoms and legitimate interests, or (3) is not based on the data subject’s explicit consent.
If the decision: (1) is necessary for entering into, or the performance of, a contract between the data subject and a data controller, or (2) it is based on the data subject’s explicit consent, Chordoma Foundation shall implement suitable measures to safeguard the data subject’s rights and freedoms and legitimate interests, at least the right to obtain human intervention on the part of the controller, to express his or her point of view and contest the decision.
If a data subject wishes to exercise the rights concerning automated individual decision-making, he or she may at any time directly contact us.
If we wish to use your personal information for a new purpose, not covered by this Privacy Policy, then we will provide you with a new notice explaining this new use prior to commencing the processing and setting out the relevant purposes and processing conditions. Where and whenever necessary, we will seek your prior consent to the new processing.
7. Information Storage and Security
We employ reasonable security precautions to protect personal information about you. The Site is operated from a secure environment with integrated security measures to help protect against the loss, misuse, and alteration of personal information provided through the Site. These security measures include Secure Socket Layer (SSL) technology data transmission. However, no method of transmitting or storing data is completely secure. As a result, although we strive to protect personal information about you, we cannot guarantee the security of any information you transmit to us through or in connection with the Site. If you have reason to believe that personal information is no longer secure, please notify us immediately by contacting us in accordance with the last section below.
8. A Special Note about Children
The Site is neither designed nor intended to attract children under the age of 13, and we do not collect personal information from any individual who we actually know is under the age of 13. We ask that children under the age of 13 not submit any personal information to us.
9. External Links
The Site contains links to various websites that Chordoma Foundation does not control. When you click on one of these links, you will no longer be transacting business through the Site. Third party websites maintain their own privacy policies, and we do not exercise any control over any of the third party websites that may be linked to the Site. If you visit a website that is linked to the Site, you should consult that website’s privacy policy before providing any personal information. Please be aware that we are not responsible for the privacy practices of such other websites, and we are not liable for their misuse of personal information about you.
10. Special Admonitions for International Use
The owner of the Site is based in the State of North Carolina in the United States. Access to the Site may not be legal by certain persons or in certain countries. If you access the Site from outside the United States, you do so on your own initiative and are responsible for compliance with local laws. If you are located outside the United States and you contact us or provide information through the Site, please be advised that any information you provide to us will be transferred to the United States, and that by submitting information, you explicitly consent to and authorize such transfer.
11. Updates to this Privacy Policy
We may change or update the Site or any of our policies and procedures without prior notice. We will post a notice on this Site to advise you of any significant changes to this Privacy Policy and indicate at the top of this statement when it was most recently updated. Your continued use of the Site signifies your continued assent to the terms of this Privacy Policy, as updated or amended at that time.
12. Questions Regarding this Privacy Policy
The Data Controller for the purposes of GDPR or other data protection laws applicable in Member states of the European Union and other provisions related to data protection is the Chordoma Foundation. Any data subject may, at any time, contact us directly with any questions and suggestions concerning data protection, and if you have any questions or comments regarding this Privacy Policy, please send us an email at [email protected] or send a letter via U.S. mail to:
Chordoma Foundation
Post Office Box 2127
Durham, North Carolina 27702
This Privacy Policy is effective as of March 19, 2012.
Last Updated: December 1, 2018.
