2. Personal Information We Collect
A. Actively Collected Information
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
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:
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:
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.
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
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.
Post Office Box 2127
Durham, North Carolina 27702
Last Updated: December 1, 2018.