Last Modified: 12JUN2025

These Terms of Use (these “Terms”) are agreed between you and Ultragenyx Pharmaceutical Inc. (“Ultragenyx”, “we” or “us”). These Terms govern your access to and use of our website https://www.rarediseasegenes.com (the “Website”) and related services (collectively, the “Services”).

If you want to learn more about the personal information that we may collect on the Services, including information you provide to register with the Services and information collected by us through your use of any features on the Services, please read our Privacy Policy.

Please review these Terms carefully before using the Services. You accept and agree to be bound by and comply with these Terms by using the Services. If you do not agree to these Terms, you must not access or use the Services.

The Services are offered and available only to users who are at least eighteen (18) years of age, and by accepting these Terms, you represent and warrant that you meet all of the foregoing eligibility requirements. If you do not meet these requirements, you must not access or use the Services.

As between you and us, these Terms are effective from the first moment you access the Services and will remain effective thereafter in perpetuity, unless terminated earlier as provided herein.

I. Changes to These Terms

We may revise and/or update these Terms, in our sole discretion, from time to time, to the full extent permitted by applicable laws. All changes are effective immediately when we post them and apply to all of your access to and use of the Services thereafter. If you continue to use the Services after we post the revised and/or updated Terms, it means that you accept and agree to the revisions and/or updates. You are expected to check this page from time to time so you are aware of any changes, as they are binding on you. The date these Terms were last revised and/or updated is identified at the top of this page.

II. No Medical Advice

You acknowledge and agree that neither Ultragenyx nor any of its affiliates provide any form of medical care, medical opinion, medical advice, diagnosis, or treatment, and that Ultragenyx does not evaluate the need to seek medical attention, through the Services. The Services are for informational purposes only and are not intended as a substitute for professional medical advice, diagnosis, or treatment. You should not use the information in the Services for diagnosing or treating a health problem or disease, or prescribing any medication or other treatment. Any links within the Services to external websites for any product, do not constitute a medical recommendation regarding such products. Always seek the advice of your physician or other qualified health provider before taking any medication or supplement and with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on the Services. If you think you may have a medical emergency, call your doctor or emergency services. Reliance on the Services is solely at your own risk. Information provided through the Services DOES NOT create a doctor-patient relationship between you and Ultragenyx or any of its affiliates. Information and statements regarding Services have not been evaluated by the U.S. Food and Drug Administration or any comparable international or national agency and the results reported, if any, may not necessarily occur in all individuals. The Services are not intended to diagnose, treat, cure, or prevent any disease. All Products should be used strictly in accordance with their instructions, precautions and guidelines. No medications, medical treatments, or diagnostic tests are made available through the Services.

THE SERVICES AND ANY INFORMATION OR CONTENT INCLUDED THEREIN OR ANY OUTPUTS THEREFROM ARE SO PROVIDED ON THE CONDITION, AND BASED ON THE ASSUMPTION, THAT YOU ARE SOLELY AND EXCLUSIVELY RESPONSIBLE FOR YOUR HEALTH AND MEDICAL CARE.

III. Use Rights; Prohibited Conduct

You may access and use the Services only for lawful purposes, for your personal, non-commercial uses, and in accordance with these Terms. Any use of the Services in a way not expressly permitted by these Terms is a breach of these Terms. In addition to any other prohibitions stated in these Terms, you may not access or use, or attempt to access or use, the Services to take any action that could harm us or any third party, interfere with or otherwise inhibit the operation of the Services, or use the Services in a manner that violates any applicable law. For example, and without limitation, you may not:

• use the Services for any unlawful purpose;
• access or use the Services, directly or indirectly, to collect any market research for a competing business;
• take any action, or upload, post, e-mail, transmit, or otherwise make available any content, that: (i) infringes any copyright, trademark, right of publicity, or other proprietary rights of any person or entity; (ii) is threatening, tortious, defamatory, indecent, invasive of another’s privacy, or promotes violence; or (iii) discloses any sensitive information about another person, including that person’s e-mail address, postal address, phone number, credit card information, health information or any similar information;
• impersonate any person or entity (including Ultragenyx) or otherwise misrepresent your affiliation;
• infringe, misappropriate, or violate the intellectual property, proprietary, or other rights (including the rights of publicity or privacy) of others;
• engage in unauthorized spidering, “scraping,” copying, or other harvesting of content or data (including personal information) made available on or through the Services, or use any other unauthorized automated device, process, or means to access the Services, including to compile information;
• use any manual process to monitor or copy the Services, or for any other purpose not expressly authorized in these Terms, without our prior written consent;
• take any action that imposes an unreasonable or disproportionately large load (as determined in our sole discretion) on our network or infrastructure or that could otherwise disable, overburden, damage, or impair the Services or interfere with or otherwise inhibit any other person’s or entity’s access to or use of the Services;
• use any device, software, or routine to interfere or attempt to interfere with the proper working of the Service or any activity conducted on the Service or attempt to probe, scan, test the vulnerability of, or breach the security of any system or network;
• decipher, decompile, disassemble, reverse-engineer, or otherwise reduce to a human-readable form any of the software comprising or in any way making up a part of the Services (except to the extent that such restrictions are prohibited by applicable law);
• introduce any viruses, trojan horses, worms, logic bombs, or other software code or other material which is malicious or technologically harmful;
• gain unauthorized access to, interfere with, damage, or disrupt any parts of the Services, the servers on which the Services are stored, or any server, computer, database, or other website connected to the Services;
• attack the Services via a denial-of-service attack or a distributed denial-of-service attack;
• distribute any unauthorized materials or advertise or promote goods or services without our permission (including, without limitation, by sending spam);
• engage in any other conduct that restricts or inhibits any person from using or enjoying the Services, or that, in our sole judgment, exposes us or any of our users, affiliates, or any other third party to any liability, damages, or detriment of any type; or
• attempt to do, or assist any person in doing, any of the above.

We reserve the right, in our sole and absolute discretion, to deny you access to the Services, or any portion of the Services, without notice, and to remove any comments that do not adhere to these guidelines. If you find something that violates the above prohibited uses, please let us know, and we’ll review it.

The Services may include notices of additional rules and/or guidelines, as set forth in the Website. You hereby agree to comply with any such additional rules and/or guidelines when using the applicable website or application.

Unauthorized use of the Services, including violations of system or network security, may result in civil or criminal liability. We may take legal action, including investigating and working with law enforcement authorities to prosecute users, for any illegal or unauthorized use of the Services.

IV. Intellectual Property Rights; Ownership

The Services contain materials, such as software, text, graphics, images, sound recordings, audiovisual works, and other material provided by or on behalf of Ultragenyx (collectively referred to as the “Content”). The Content may be owned by us, our affiliates, or by third parties. The Content is protected under both United States and foreign laws. You have no rights in or to the Content, and you will not use the Content except as permitted under this Agreement. No other use is permitted without prior written consent from us. You must retain all copyright and other proprietary notices contained in the original Content on any copy you make of the Content. You may not sell, transfer, assign, license, sublicense, or modify the Content or reproduce, display, publicly perform, make a derivative version of, retransmit, distribute, or otherwise use the Content in any way for any public or commercial purpose. The use or posting of the Content on any other website or in a networked computer environment for any purpose is expressly prohibited. In addition, you may not use (or permit the use of) any Content for the purposes of developing, training, testing or validating any artificial intelligence model, tool or platform.

If you violate any part of this Agreement, and without prejudice to any other remedies we may have under this Agreement or otherwise, your permission to access and/or use the Content and the Services automatically terminates and you must immediately destroy any copies you have made of the Content.

The trademarks, service marks, and logos of Ultragenyx and our affiliates (“Ultragenyx Trademarks”) used and displayed on the Services are registered and unregistered trademarks or service marks of Ultragenyx or our affiliates. Other company, product, and service names located within the Services may be trademarks or service marks owned by others (the “Third-Party Trademarks”, and, collectively with the Ultragenyx Trademarks, the “Trademarks”). Nothing contained within the Services should be construed as granting, by implication, estoppel, or otherwise, any license or right to use the Trademarks, without our prior written permission specific for each such use. Use of the Trademarks as part of a link to or from any site is prohibited unless establishment of such a link is approved in advance by us in writing. All goodwill generated from the use of the Ultragenyx Trademarks inures to our benefit.

Elements of the Services are protected by trade dress, trademark, unfair competition, and other state and federal laws and may not be copied or imitated in whole or in part, by any means, including but not limited to the use of framing or mirrors.

With respect to all e-mails and other information you send to us, including but not limited to, feedback, questions, comments, suggestions, and the like, we shall be free to use any ideas, concepts, know-how, or techniques contained in your communications for any purpose whatsoever, including but not limited to, the development, production and marketing of products and services that incorporate such information.

V. Third-Party Materials

The Services may utilize or contain links to third-party content, services, integrations, or other materials. Use of any third-party content, services, integrations, or other materials, whether or not initiated through the Services is at your own risk and subject to any terms of use, privacy policies, and other terms and conditions applicable to such third-party content, services, integrations, or other materials. We do not control, endorse, sponsor, recommend, or otherwise accept responsibility for any loss or damage that may arise from your use of, any such third-party content, services, integrations, or other materials and we do not make any representations or warranties with respect thereto.

VI. Customer Content

The Services may permit users to submit content through the Services, including but not limited to, registering a variant if you are a healthcare professional (collectively, the “Customer Content”). That said, we may remove Customer Content that violates the terms of this Agreement, or that is offensive or otherwise unacceptable to us in our sole discretion.

You expressly acknowledge and agree that once you submit your Customer Content for inclusion into the Services, it will be accessible by others, and that there is no confidentiality or privacy with respect to such Customer Content, including, without limitation, any personally identifying information that you may make available. YOU, AND NOT ULTRAGENYX, ARE ENTIRELY RESPONSIBLE FOR ALL YOUR CUSTOMER CONTENT THAT YOU UPLOAD, POST, E-MAIL, OR OTHERWISE TRANSMIT VIA THE SERVICES.

You retain all copyrights and other intellectual property rights in and to the Customer Content. You do, however, hereby grant us a non-exclusive, royalty-free, sublicensable, transferable, perpetual license to modify, compile, combine with other content, copy, record, synchronize, transmit, translate, format, distribute, publicly display, publicly perform, and otherwise use or exploit your Customer Content as reasonably necessary to provide the Services, to comply with applicable laws and regulations, and for any other lawful purpose.

If you register a variant through the Services, you expressly represent and warrant that: (i) you are a healthcare professional; (ii) you have obtained all required authorizations from and provided all required notices to the individual to whom the variant initially relates (“Patient”), in accordance with applicable laws, including privacy and data protection laws; and (iii) prior to registering it through the Services, you have taken all necessary steps to anonymize the variant data and ensure such data will no longer permit the reidentification of the Patient.

If you submit Customer Content to us, each such submission constitutes a representation and warranty to Ultragenyx that: (i) such Customer Content is your original creation (or that you otherwise have the right to provide the Customer Content), (ii) you have the rights necessary to grant the license to the Customer Content under the prior paragraph, and (iii) it and its use by Ultragenyx and its content partners as permitted by this Agreement does not and will not infringe or misappropriate the intellectual property or moral rights of any person or contain any libelous, defamatory, or obscene material or content.

VII. Changes to the Services

We reserve the right to withdraw or amend the Services, including the right to remove any links to third-party sites, in our sole discretion and without notice to you. We will not be liable if all or any part of the Services becomes unavailable for any reason, at any time, or for any period. From time to time, we may restrict access to some parts of the Services, or entire Services, to all users or particular users, without notice, in our sole discretion.

VIII. Disclaimer of Warranties; Limitation of Liability

YOUR USE OF, AND YOUR RELIANCE ON OR ACTIONS OR INACTION BASED ON, THE SERVICES OR ANY THIRD-PARTY SITES LINKED TO OR FROM THE SERVICES IS AT YOUR OWN RISK. THE SERVICES ARE PROVIDED ON AN “AS IS” AND “AS AVAILABLE” BASIS WITHOUT WARRANTIES OF ANY KIND, EITHER EXPRESS OR IMPLIED, STATUTORY OR OTHERWISE, INCLUDING WITHOUT LIMITATION WARRANTIES OF MERCHANTABILITY, FITNESS FOR A PARTICULAR PURPOSE, AND NON-INFRINGEMENT. WE DO NOT WARRANT THE ADEQUACY, CURRENCY, ACCURACY, LIKELY RESULTS, SECURITY, RELIABILITY, QUALITY, AVAILABILITY, OR COMPLETENESS OF THE SERVICES OR ANY THIRD-PARTY SITES LINKED TO OR FROM THE SERVICES, OR THAT THE FUNCTIONS PROVIDED THEREBY WILL BE UNINTERRUPTED, VIRUS, OR ERROR-FREE, THAT DEFECTS CONTAINED THEREIN WILL BE CORRECTED, OR THAT THE SERVICES WILL OTHERWISE MEET YOUR NEEDS OR EXPECTATIONS. WITHOUT LIMITING THE FOREGOING, WE EXPRESSLY DISCLAIM ANY LIABILITY, TO THE FULLEST EXTENT PERMITTED BY APPLICABLE LAW, FOR ANY ERRORS OR OMISSIONS IN THE CONTENT INCLUDED IN THE SERVICES OR ANY THIRD-PARTY SITES LINKED TO OR FROM THE SERVICES.

TO THE FULLEST EXTENT PROVIDED BY LAW, IN NO EVENT WILL WE, OR OUR SUBSIDIARIES, AFFILIATES, LICENSORS, AND SERVICE PROVIDERS, AND OUR AND THEIR RESPECTIVE DIRECTORS, OFFICERS, EMPLOYEES, CONTRACTORS, LICENSORS, SUPPLIERS, AGENTS, SUCCESSORS, AND ASSIGNS BE LIABLE FOR ANY DAMAGES OF ANY KIND, INCLUDING DIRECT, INDIRECT, SPECIAL, INCIDENTAL, CONSEQUENTIAL OR PUNITIVE DAMAGES, LOST PROFITS, OR OTHER DAMAGES WHATSOEVER, UNDER ANY LEGAL THEORY, ARISING OUT OF OR IN CONNECTION WITH YOUR USE OF, OR INABILITY TO USE, OR RELIANCE ON ACTIONS OR INACTION BASED ON, THE SERVICES OR ANY THIRD-PARTY SITES LINKED TO OR FROM THE SERVICES, ANY INTERRUPTION IN AVAILABILITY OF THE SERVICES, DELAY IN OPERATION OR TRANSMISSION, COMPUTER VIRUS, LOSS OF DATA, OR USE, MISUSE, RELIANCE, REVIEW, MANIPULATION, OR OTHER UTILIZATION IN ANY MANNER WHATSOEVER OF THE SERVICES OR THE DATA COLLECTED THROUGH THE SERVICES, AND WHETHER CAUSED BY TORT (INCLUDING NEGLIGENCE), BREACH OF CONTRACT, OR OTHERWISE, EVEN IF SUCH DAMAGES ARE FORESEEABLE AND EVEN IF ONE OR MORE OF THEM HAS BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES OR LOSS. ANY CLAIM ARISING OUT OF OR CONNECTED WITH THE SERVICES WILL BE LIMITED TO $100.

THE FOREGOING DOES NOT AFFECT ANY WARRANTIES OR LIABILITIES WHICH CANNOT BE EXCLUDED OR LIMITED UNDER APPLICABLE LAW.

IX. Indemnification

You agree, to the maximum extent permissible under applicable law, to indemnify, defend and hold us and our subsidiaries, affiliates, licensors, and service providers, and our and their respective directors, officers, employees, contractors, licensors, suppliers, agents, successors, and assigns, harmless from and against any and all loss, costs, expenses (including attorneys’ fees and expenses), claims, damages, and liabilities related to or associated with (a) your access to, use of, or misuse of the Services; (b) any violation, alleged violation, or other breach by you of these Terms; (c) your failure to comply with applicable law (including any failure to obtain or provide any necessary consent or notice); or (d) your infringement or other violation of any third party’s rights. We reserve the right to assume the exclusive defense of any claim for which we are entitled to indemnification under this Section VII. In such event, you shall provide us with such cooperation as we reasonably request.

X. Termination

We may terminate these Terms by notice to you at any time. These Terms will terminate automatically without notice to you if you breach or violate any provision of these Terms. You may terminate these Terms, for any reason, at any time by ceasing your access to and use of the Services. Upon termination, all rights granted to you under these Terms immediately terminate. Sections IV, V, and VIII through XIII will survive any expiration or termination of these Terms.

XI. Choice of Law and Forum

You agree that these Terms, and your access to and use of the Services, will be governed by and will be construed in accordance with the law of the State of California without regard to principles of choice or conflicts of laws. You agree that any claim or dispute against us arising out of or relating to these Terms or the Services that is not resolved by binding arbitration as set forth above must be instituted exclusively in the federal and state courts located in San Francisco unless otherwise agreed upon in writing by all parties. However, subject to the arbitration provisions set forth above, we retain the right to bring any suit, action, or proceeding against you for breach of these Terms in your state of residence or any other relevant state. You waive any and all objections to the exercise of jurisdiction over you by such courts and to venue in such courts.

XII. CLASS ACTION WAIVER

You agree that any proceeding shall be limited to the Dispute between us and you individually. To the full extent permitted by law, (i) there is no right or authority for any Dispute to be brought on a class action-basis or to participate in any class action as a plaintiff, claimant, or class member; and (ii) there is no right or authority for any Dispute to be brought in a purported representative capacity on behalf of the general public or any other persons. YOU AGREE THAT YOU MAY BRING CLAIMS AGAINST US ONLY IN YOUR INDIVIDUAL CAPACITY, AND NOT AS A PLAINTIFF OR CLASS MEMBER IN ANY PURPORTED CLASS OR REPRESENTATIVE PROCEEDING. Notwithstanding this provision, either party may participate in a class-wide settlement.

XIII. Miscellaneous

1. Entire Agreement. These Terms constitute the sole and entire agreement between you and us with respect to the Services, superseding any prior or contemporaneous communications and proposals (whether oral, written or electronic) between you and us with respect to the Services.
2. Assignment. You may not assign or transfer these Terms without our prior written consent. We may assign or transfer these Terms without restriction.
3. Severability. In the event any provision of these Terms is held unenforceable, it will not affect the validity or enforceability of the remaining provisions and will be replaced by an enforceable provision that comes closest to the intention underlying the unenforceable provision.
4. No Joint Venture, Partnership, Employment, or Agency Relationship. You acknowledge and agree that no joint venture, partnership, employment, or agency relationship exists between you and us as a result of these Terms or your access to and/or use of the Services.
5. No Waiver. No waiver by us of any term or condition set forth in these Terms shall be deemed a further or continuing waiver of such term or condition, or a waiver of any other term or condition. Our failure to enforce any provisions of these Terms or respond to a violation by any party does not waive our right to subsequently enforce any terms or conditions of the Terms or respond to any violations.
6. Legal Compliance. Nothing contained in these Terms is in derogation of our right to comply with governmental, court, and law enforcement requests or requirements relating to your use of the Services or information provided to or gathered by us with respect to such use.