Privacy Policy

Please Read Carefully Prior to Using This Website

Last updated: 2019 – 08 – 17

Ultragenyx Pharmaceutical Inc. (“Ultragenyx”) respects the privacy of visitors to its websites and values the confidence of its customers, partners, patients, and employees.

This Privacy Policy sets forth Ultragenyx’s practices regarding the collection, use, and disclosure of personal data through this site (the “Website”), and the rights you have in relation to such information. By continuing to use the Website, you acknowledge that Ultragenyx processes your personal data as described in this Privacy Policy. Please read this entire Privacy Policy before using this Website or submitting personal data to Ultragenyx through this Website.

Data Collection and Use

Visitors to the Website are not required to provide personal data when they visit the Website.

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.

Our Website also uses cookies and other tracking technologies to automatically collect information about how you use the Website. For more information about how we use cookies on our Website, please see our Cookie Policy.

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, including 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.

Data Sharing

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.

Children’s Data

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.

Your Rights

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.


Ultragenyx takes steps 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.”

Data Storage

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

As a convenience to our visitors, our sites currently contain links to a number of other (non-Ultragenyx) sites that we believe may offer useful information. Such links do not constitute an endorsement by Ultragenyx of those other websites, the content displayed therein, or the persons or entities associated therewith. This Privacy Policy does not apply to those sites. You should contact those sites directly for information on their privacy policies, confidentiality agreements, and data collection/distribution procedures.

Please note that linked non-Ultragenyx sites may also use cookies. Ultragenyx cannot control the use of cookies by these non-Ultragenyx sites. We also want you to know that when you link from this Website to another website, that site may have the ability to recognize that you have come from an Ultragenyx site. If you do not want any other websites to know that you have been on this Website, we recommend that you do not use the links provided in our site. If you have any questions about how third party sites use cookies, you should contact such third parties directly.

Contact information

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
E-mail: [email protected]

Our data protection officer can also be contacted by email at [email protected] and by post at the same address above, addressed for the attention of the Data Protection Officer.


Ultragenyx can change this notice anytime, so you may wish to check it each time you visit our Website.