RareTx Privacy Notice
Last Updated: December 17, 2025
This Privacy Notice describes how we at RareTx collect, use, and disclose your personal information when you visit our website, participate in any RareTx clinical trial pre-screening activities, participate in patient advocacy activities, or otherwise interact with us. Please read this Privacy Notice carefully.
If you are a current research participant in a RareTx clinical trial, please review the informed consent form you received as part of that trial for an explanation of our privacy practices and how we use your personal information during the clinical trial.
If you have any questions about this Privacy Notice or our data practices, please reach out using our contact information below.
How We Collect Your Personal Information
We may collect personal information:
Directly from you. We may collect information you provide to us directly, such as when you send us a comment or question, complete a pre-screening questionnaire, or when you request information through our website.
Through Automated Tracking Technologies. We collect personal information through cookies and other automated tracking technologies when you interact with our website or our emails. This may include information about how you use and interact with our website and emails, including information about your device and internet usage information and whether you interacted with or clicked on email or website content.
We may combine personal information that we receive from various sources.
What Personal Information We Collect
Depending on how you interact with us, we may collect the following categories of personal information from or about you:
Identifiers, such as your name, email address, and your Internet Protocol (“IP”) address.
Internet and other electronic activity information, such as your Internet Protocol (IP) address, information about your device (like your operating system, browser type, and language), referring URLs (i.e., websites you navigate to our website from), access times, pages viewed, links clicked, use of our website’s interactive features, and other information about your interactions with our website.
Geolocation information, such as the non-precise location information we derive from your IP address.
Sensitive information, such as your health and medical history and other sensitive information you may provide during clinical trial pre-screening activities. Note that this information is generally collected on our behalf by entities with whom we contract to coordinate our research studies and recruit research participants (our “Research Vendors”).
Any other information you choose to provide us, such as information within communications to us and that we collect through our patient advocacy activities.
How We Use Your Personal Information
We may use the personal information that we collect and maintain for the following purposes:
To provide services. We may use your personal information to provide services, such as responding to your requests, engaging in our patient advocacy activities, and communicating with you.
For internal business purposes. We may use your personal information to maintain and operate our website, including to understand how our website is used.
To determine your eligibility to participate in our studies. We may use your personal information to determine whether you would be a good candidate for our research studies.
For legal, safety, or security reasons. We may use your personal information to detect, investigate, and prevent risk, fraudulent events, and other illegal activities, to manage legal claims, subpoenas, and requests in connection with investigations and dispute-resolution processes, as permitted or required by applicable law, and to protect the rights and property of RareTx and others.
In connection with a corporate transaction. We may use your personal information if we acquire assets of another business or sell or transfer all or a portion of our business or assets including through a sale in connection with bankruptcy and other forms of corporate change.
We may also anonymize, de-identify, or aggregate your personal information to use for any purpose permitted by law.
How We Disclose Your Personal Information
We may disclose your personal information to the following parties, as follows:
Service providers. We may disclose your personal information to third parties that provide services to us, such as our Research Vendors, web hosting, data storage, business support, marketing, and other IT services providers. It is our policy to require our service providers to keep the information confidential and to not use the information outside of our business relationship.
Auditors and advisors. We may disclose your personal information to auditors for the performance of audit functions and with advisors to receive legal and other advice.
Our business partners. We may disclose your personal information to parties with whom we work or conduct research if, for example, we need to refer you to someone outside of RareTx to answer your question.
Mergers, acquisitions, and bankruptcy. If RareTx ever files for bankruptcy or merges with another company, or if RareTx decides to buy, sell, or reorganize some part or all its business, RareTx may disclose your personal information to parties involved in the transaction. It is RareTx’s practice to seek appropriate protection for personal information disclosed in these types of transactions.
As required by law and other legal-related disclosures. We may disclose your personal information if we believe in good faith that disclosure is necessary: (a) to comply with the law, such as to report possible adverse events or to respond to legal process (e.g., court order, subpoena, search warrant) or other legal requirements of any governmental authority; (b) to protect the integrity of our website and services; (c) to protect and defend our, your, or others’ rights, property, safety or interests; or (d) to detect, prevent, or respond to fraud, intellectual property infringement, violations of our agreements, violations of law, or other misuse of our website and services.
Cookies and Similar Technologies
We may collect information on our website by automated means such as through cookies, web beacons, log files, local storage and similar technology (collectively,“cookies”). We use these technologies to load our website, uniquely identify visitors, and store information or settings in/retrieve such information from the user’s browser/device. The categories of cookies we use generally fall into one of the following categories:
Necessary: We use first party cookies that are essential for the operation of our websites and enable their functionality, such as certain security, multimedia and load balancing features.
Statistics and Performance: These cookies allow us to count visits and traffic sources, and understand how you interact with our website, so we can measure and improve their performance. If you do not allow these cookies we will not know when you have visited our website and will not be able to monitor its performance. We may use Google Analytics or comparable platforms in limited geographies to gather traffic information to allow us to improve our websites and apps and support their functionality. To prevent Google from receiving your user activity on websites and apps, see https://tools.google.com/dlpage/gaoptout.
Non-essential cookies can be declined. If you do not want us to collect any information through tracking technologies, you can set your web browser to reject certain cookies. Each browser is different, so you should check your browser’s “Help” menu to learn how to change your cookie preferences. If you reject or block cookies from our website, the website may not function as intended.
Some browsers transmit “do-not-track” signals to websites. Our website does not take steps to honor these “do-not-track” signals.
Retention of Your Personal Information
As a general matter, we may keep your personal information for as long as necessary to fulfill the purposes for which it was collected, such as for the period we carry out specific research and a reasonable period thereafter. If a law requires us to retain your personal information for a longer period of time, we will comply with that law. We may also retain your personal information as necessary to protect or resolve dispute, establish legal defenses, conduct audits, pursue legitimate business purposes, enforce our agreements, and comply with applicable laws.
Security of Your Personal Information
We maintain reasonable physical, technical, and administrative measures designed to protect your personal information. Unfortunately, no data transmission or storage system can be guaranteed to be 100% secure. While we strive to protect your personal information from unauthorized access, use, or disclosure, RareTx cannot and does not ensure or warrant the security of your information.
Notice to California Residents
This section supplements the information and disclosures contained above. It applies only to California residents about whom we collect personal information as a business under the California Consumer Privacy Act (“CCPA”). Below describes our practices with respect to personal information over the past 12 months:
RareTx has collected the categories of personal information listed in “What Personal Information We Collect” above. The purposes for which RareTx has collected personal information and the sources of that information are respectively described in “How We Collect Your Information” and “How We Use Your Personal Information” above.
RareTx has disclosed personal information for business purposes to the categories of third parties listed in the “How We Disclose Your Personal Information” section above.
RareTx has not “shared” your personal information for the purposes of targeted advertising or “sold” personal information. We do not knowingly sell the personal information of minors under the age of 16.
California residents also have the following privacy rights under the CCPA, which are subject to certain legal exceptions:
Right to know and access: You have the right to access and obtain a copy of the personal information we have collected about you.
Right to correct: You have the right to request that we correct inaccurate personal information that we maintain about you.
Right to delete: You have the right to request that we delete the personal information that we have collected about you. We may deny your request under certain circumstances, such as if we need to comply with our legal obligations or complete a transaction for which your personal information was collected. If we deny your request for deletion, we will let you know the reason why.
Right to opt out of sale/sharing: You have the right to opt out of the sale or sharing of your information. We do not currently sell or share your personal information.
Right to nondiscrimination: You have the right to not be discriminated against for exercising these rights.
To exercise your CCPA rights, contact us at info@raretx.us or (445) 201-3569. We will take steps to verify your identity before processing certain requests. We will not fulfill your request unless you have provided sufficient information for us to reasonably verify you are the individual about whom we collected personal information. We may request additional information about you to verify your identity. We will only use the personal information provided in the verification process to verify your identity or authority to make a request and to track and document request responses unless you initially provided the information for another purpose.
You may be able to use an authorized agent to submit a rights request on your behalf. When we verify your agent’s request, we may verify your identity and request a signed document from you that authorizes your agent to make the request on your behalf. To protect your personal information, we reserve the right to deny a request from an agent that does not submit proof that they have been authorized by you to act on their behalf.
Notice to Non-U.S. Individuals
RareTx is the data controller of the personal information collected under this Privacy Policy. You may contact our Data Protection Officer at: info@raretx.us.
We generally process your personal information pursuant to the following legal bases: in furtherance of our contract with you; to comply with our legal obligations; in accordance with your consent; or pursuant to our legitimate interests in operating our business and improving the services we provide.
Depending on where you live, you may have certain rights with respect to the personal information we maintain about you. You may have the right to access the personal information we maintain, request correction or deletion of personal information, or request that we stop or restrict how we process your personal information. You may also have the right to lodge a complaint with the data protection authority in your country. To seek to exercise these rights, contact us at info@raretx.us. Certain exceptions may apply to these rights that would allow us to deny them in whole or in part. When that is the case, we will inform you in our response.
Links to Other Sites
Our website contains links to third party websites or services that are not under our control. If you visit another website, we encourage you to review that website’s privacy policy to understand how that website operator will treat your information. Our Privacy Notice does not apply to those other websites, and nothing identified in those website’s privacy policies shall amend, modify, or supplement in any way this Privacy Notice.
Children’s Information
Our website is intended for general audiences and is not directed to minors. We do not knowingly collect information from children under the age of 18 in connection with our website or other online services.
Updates to Privacy Notice
We reserve the right to update this Privacy Notice from time to time. In certain cases, we will attempt to notify you of updates prior to them taking effect. You are encouraged to review this Privacy Notice regularly to stay informed about our personal information practices and the choices available to you.
Contact Us
For general questions about our privacy practices, please contact us at: info@raretx.us
Please note that Adverse Events should not be reported using the above contact information.