Last updated: August 17, 2020
Please Read Carefully Prior to Using This Website
Ultragenyx Pharmaceutical Inc. with registered offices at 60 Leveroni Court, Novato, CA 94949 (hereinafter “Ultragenyx” or “we” or “us” or “our”) respects the privacy of visitors to its websites and values the confidence of its customers, partners, patients, and employees.
Data Collection and Use
When you voluntarily submit your personal data (including, but not necessarily limited to, your name, address, telephone number, and email address and relationship to the Ultragenyx product or program), Ultragenyx stores and processes this information in an electronic database. Ultragenyx may use this information as a means to contact you to obtain additional information if needed to fulfil your request, improve this site, administer your participation in a contest or promotion, or provide you with information or communications that you have requested or additional information which Ultragenyx believes may be of interest to you. Ultragenyx may use this information within the company for performing marketing studies and analyses for internal use, in accordance with applicable law.
We combine the information we receive when you visit our Website with other information we have collected, including other information we have received from you and information received from publicly and commercially available sources.
In accordance with applicable law, Ultragenyx’ legal grounds for processing your personal data are that the processing is:
- Necessary for Ultragenyx’ legitimate interests, including for the purposes described above, to tailor Ultragenyx’ communications to you and continue to enhance and improve Ultragenyx’ services;
- Necessary for compliance with Ultragenyx’ legal obligations; or
- Carried out with your consent or at your direction, which you will be free to revoke, although in that event it may be necessary to retain some information to comply with our legal obligations or protect our rights and interests.
If you do not provide certain information to us, we may, in some circumstances, be unable to comply with our obligations or provide you with the services that you request. We will tell you about the implications of not providing certain information.
We are committed to maintaining your trust, and we want you to understand when and with whom we may share the information we collect. We share your personal data with the following third parties:
- Authorized U.S., and other foreign third-party vendors and service providers. We may share your information with third-party vendors and service-providers that help us with specialized services, including billing, payment processing, customer service, email deployment, business analytics, marketing, advertising, performance monitoring, hosting, and data processing.
- Corporate affiliates. We may share your information with our corporate affiliates that are subject to this policy for the purposes set out above.
- Business transfers. We may share your information in connection with a completed or proposed corporate transaction, such as the sale of all or part of Ultragenyx, a merger, consolidation, asset sale, or in the unlikely event of bankruptcy.
- Legal purposes. We may disclose information to respond to subpoenas, court orders, legal process, law enforcement requests, legal claims or government inquiries, or as otherwise may be required or permitted by applicable law, and to protect and defend the rights, interests, health, safety, and security of Ultragenyx, our affiliates, users, or the public.
- With your consent or at your direction. We may share information for any other purposes disclosed to you at the time we collect the information or pursuant to your consent or direction. Where you choose to post information in the form of public comments this information shall be accessible by members of the public.
Furthermore, Ultragenyx may share aggregated, non-personally identifiable statistical and other information about users to third parties for legitimate business purposes, including commercial purposes, but in such cases will not identify you or any other specific individual.
International Data Transfers
Ultragenyx is a company based in the U.S., and your use of our Website and Service will involve the transfer, storage, and processing of your personal data in U.S. Ultragenyx only transfers your personal data to a third party or overseas when it is satisfied that adequate levels of protection are in place to protect the integrity and security of any information being processed, in compliance with applicable privacy and data protection laws.
For individuals resident in the EU only: Some of these recipients of the information we collect are located outside of the European Union, including in countries that may not provide the same level of data protection as in the EU. Ultragenyx shall take appropriate steps to ensure that such recipients are bound to duties of confidentiality and we implement measures such as Standard Contractual Clauses approved by the European Commission to ensure that any transferred personal data, remains protected and secure. A copy of these clauses can be obtained by contacting us at the address listed below in the “Contact Information” section.
We do not knowingly collect any personal information from minors in your jurisdiction without parental consent, unless permitted by law. If we learn that a minor has provided us with personal information, we will delete it in accordance with the applicable law.
Visitors below the age of majority in your jurisdiction must obtain permission from their parent or guardian before registering on this Website, sending any personal data, participating in online discussions, or submitting content to this Website. Unless otherwise specified, you must be at least the age of majority in your jurisdiction to participate in any online promotion or contest. Ultragenyx may restrict the ability of any visitor to submit content or to access any part of the Website at Ultragenyx’ sole discretion.
In accordance with applicable law, you may have the right to request opting out of receiving commercial email messages from us. You can exercise this right by following the instructions contained in those email messages.
In accordance with applicable law, you may have the right to object to or request restriction of processing of your personal data, and the right to request access, rectification, erasure and portability of your own personal data. Where Ultragenyx is using your information on the basis of your consent, you have the right to withdraw this consent at any time without affecting the lawfulness of the processing based on consent before its withdrawal. Requests should be submitted in writing to the address listed below in the “Contact Information” section.
You also have the right to lodge a complaint with your data protection authority and, where provided for under the applicable law, demand compensation for the damages that you have suffered as a result of unlawful processing of your personal data.
A list of all EU data protection authorities, and their individual contact details, is available on the European Data Protection Board website at: https://edpb.europa.eu/about-edpb/board/members_en
Ultragenyx will apply reasonable and appropriate technical, administrative and physical safeguards designed to protect the information collected through its websites against loss, interference, misuse, unauthorized access, disclosure, alteration or destruction. Ultragenyx also maintains reasonable procedures to help ensure that such data is reliable for its intended use and is accurate complete and current, and it seeks to ensure its service providers do the same. However, please be aware that there is always some risk involved when submitting data over the Internet. We cannot guarantee the security of our database is 100% safe from illegal tampering or "hacking."
Ultragenyx will keep your personal data for a reasonable period of time that enables us to communicate with you, provide you with any services you request, maintain business records for audit purposes or to meet recordkeeping requirements under the law, defend or bring any legal claims and deal with any queries or complaints you may have.
Links to Third Party Sites
If you have any questions, comments or concerns about how your personal data is handled on this Website, you may contact us at:
Ultragenyx Pharmaceutical Inc.
60 Leveroni Court,
Novato, CA 94949
Our data protection officer can also be contacted by email at firstname.lastname@example.org and by post at the same address above, addressed for the attention of the Data Protection Officer.
Ultragenyx can change this policy anytime, so you may wish to check it each time you visit our Website.
Notice to California Residents – Your California Privacy Rights
Under the CCPA, California residents have certain rights to transparency and to access and delete personal information. You may exercise these rights by contacting us as set forth under “Contact information” above or by calling 1-888-756-8657
We will not charge you different prices or provide different quality of services unless those differences are related to your information or otherwise permitted by law. Once we receive you request, we may verify it by requesting information sufficient to confirm your identity, including by asking you for additional information. If you would like to use an agent registered with the California Secretary of State to exercise your rights, we may request evidence that you have provided such agent with power of attorney or that the agent otherwise has valid written authority to submit requests to exercise rights on your behalf.
Some web browsers transmit “do-not-track” signals to websites. Because of differences in how web browsers incorporate and activate this feature, it’s not always clear whether users intend for these signals to be transmitted, or whether they’re even aware of them. We currently don’t take action in response to these signals.