Rare Disease Products Privacy Policy

Effective Date: July 2020; Last Updated: April 1, 2026

This Rare Disease Products Privacy Policy describes Shionogi Inc.’s information collection and use practices regarding its rare disease products only on the places where it appears. These include websites, portals, sign-up forms and other places it is referenced or directly linked. Other policies may apply to our collection and handling of personal information in other ways, including other product and services of Shionogi. For example, our collection and handling of personal information related to the Shionogi website is governed by the general Shionogi Privacy Policy, available at https://www.shionogi.com/us/en/privacy-policy.html.

This policy also does not apply to information we collect from employees or contractors. Our collection and use of information in connection with clinical trials or other health-related research is not covered by this Policy - it is described in the consent forms and/or other notices provided for those purposes. This policy also does not apply to our collection and processing of “consumer health data” collected from Washington or Nevada residents as discussed in our Health Data Privacy Policy.

By using the website or providing your personal information to us, you consent to the use of your information in accordance with this Policy. If you do not agree with any term in this Policy, you should not access and use the website or provide your personal information.

What information we collect depends on our relationship with you and the jurisdictions in which you reside. It may also depend on the laws that apply in your jurisdiction. Depending on these, we may collect the following:

Contact information. We collect your name, email address, home address, and phone number. For healthcare providers, we may collect the name of your practice, hospital, or company.

Demographic information. We may collect information like your date of birth, ZIP code, and state. We may also collect information about your income and marital status.

Eligibility information. We may collect certain health, insurance, or eligibility information to determine if you can join the programs we manage.

Professional information. We may collect resumes, education, and employment history from clinical trial investigators and site coordinators. Healthcare providers may also choose to provide information about their education, specialties, or professional groups they’re a part of. We may collect professional license numbers from providers.

Submitted information. We collect any other information you voluntarily provide to us. For example, if you choose to share any information about your treatment journey.

Adverse event information. If you are reporting an adverse event or product complaint we may collect name, age, and sex/gender. We will also collect other details about the situation.

Website and device information. We collect information about the browser you are using. We also collect information about the websites you came from and where you visit when you leave our website. We may also collect your operating system and IP address. We also look at the pages of our website you visit and any actions you take. We also collect device identifiers—this might include your hardware model. We may also collect information about your interactions with our emails and advertisements.

Notice under California law: California law requires that we tell you what categories of information we might share for cross-contextual behavioral advertising purposes. The categories of information we might share for cross-contextual behavioral advertising are contact and demographic information. It might also include website and device information. To change your preferences read our Notice of Right to Opt-out of Sale/Sharing below.

We use the categories of information for business and commercial purposes outlined here:

We use information to communicate with you. We use information to respond to your requests or questions. We also use it to send you updates and tell you about our policies and terms.

We use information to provide and improve our products and services. We use information to improve our products, website, and services. This includes customizing your experience with us. We also use information to make funding decisions and to determine partnerships with organizations. We use information to provide education and assistance programs. For healthcare providers, we may use information to send you information or put you in touch with requested resources.

We use information for marketing purposes. If the law allows, we may use your information to tell you about new products, programs, or events. This may be about what we offer or what other companies offer. We also use information to provide you with newsletters or other content we think you may find interesting, send you surveys, or ask you to join in market research by phone or email. We may also use information to contact you about being a brand ambassador or other consulting opportunities. We may also use your information to show you ads based on your interests. This includes showing you content on our platforms or on social media platforms. This may occur after you leave our websites or platforms and may encourage you to return. We may also show ads that we think you may be interested in based on your website browsing habits or online activities.

We use information to protect ourselves and others. We use information to protect our company. This includes looking into any reports or complaints and collecting information to meet legal requirements. This also includes identifying fraud or securing our systems. We may also use information to protect our website visitors.

We keep personal information as long as necessary or relevant for the purposes for which it was collected. We also keep information as required by law.

We do not use or disclose sensitive personal information, as defined by California law, for inferring characteristics or for purposes other than those permitted by law.

For more information about our privacy practices with regard to rare disease products offered by Shionogi, please see below.

We collect information directly from you. We collect information if you contact us or submit an application. This includes through enrollment and investigation forms. We also collect information from you if sign up for email communications, or provide information to us over the phone, online, or in person.

We collect information passively. We collect information about users over time and across different websites and apps. We also work with third parties that collect personal information this way. We may use several common tracking tools to collect information including, browser cookies and web beacons. To learn more about cookies visit the Federal Trade Commission’s (FTC’s) online tracking page. We may work with others to gather information on our platforms and elsewhere. We may do this on our websites and in emails that we send to you.

We collect information about you from others. Business partners may provide information about you to us. As allowed by law, providers and pharmacists may provide us with information about you.

We combine information that we have collected offline with information that we collect online as allowed by law. We combine information we have collected from other third-party websites. We combine information collected across devices, such as computers and mobile devices. We also combine information that we get from other companies with information we already have.

Below are situations when we may disclose personal information. We have also explained the categories of companies who we might disclose your personal information.

We disclose information within our family of companies. This includes companies we own or are connected with now or in the future.

We disclose your information with vendors and others who perform services for us. We may disclose all categories of information with trusted service providers. These include companies who help us deliver our products and services to you. For example, service providers who help us run our education, ambassador, and assistance programs.

We may share information for cross-contextual behavioral advertising. We may share information with third parties in order to provide cross-contextual behavioral advertising. This includes online ads targeted to your interests. The Notice at Collection (above) outlines which categories of information we share for this reason.

We may disclose information if we think we have to in order to comply with the law or to protect ourselves. We will transfer all categories of information to respond to a court order or subpoena. We will also disclose it if a government agency or investigatory body requests. This includes US and non-US law enforcement or regulatory authorities. We may also disclose this information to investigate potential fraud or to enforce our policies and terms.

We may transfer information with any successor to all or part of our business. If all or part of our business is sold, we may transfer all categories of information as part of that transaction. If there is a merger or acquisition, we may disclose your information.

We may disclose information for other reasons we may describe to you or as allowed by law.

Additional information for residents of certain US areas: California and Nevada and states with similar laws require that we tell you if we sell personal information to a third party for monetary or (in California) other valuable consideration. We do not do this. We also do not sell personal information of minors under the age of 16 for monetary or other valuable consideration.

You can opt out of certain marketing. To stop receiving our marketing emails please follow the instructions in any marketing email message you get from us. If you choose to stop receiving marketing emails you will continue to receive emails from us about your relationship with us that are allowed by law.

Cookies and Tracking Technology. When you access our website, we (and third-party companies we work with) may collect and store certain information by using technologies such as server logs, cookies, web beacons, clear gifs, tags, e-tags, flash cookies, log files, pixels, code, Javascript packages, mobile advertising IDs (such as Facebook cookies or Google's Advertising ID), cross-device linking, and similar technologies (collectively “Cookies”). The information collected includes information about your activities on our websites, IP address, browser or operating system type and version, device IDs, and demographic or inferred-interest information, as well as information or communications you have submitted to us through the website. We work with third parties who help gather this information. We collect this personal information about users over time and across different websites.

We also use this information to understand general usage and volume statistics, how users navigate to and around our sites, what content is viewed or accessed, and which products and services have been obtained. We also use these technologies to keep track of your preferences and profile information. We also use these technologies to allow third-parties to provide analytics and advertising services and serve advertisements on our behalf across the Internet and in mobile applications. For example, our advertising partners may use the fact that you visited our sites to target advertising to you on other websites and mobile apps on your current device or on other devices you use. They may match your browsers or devices if you log into the same online service on multiple devices. These third party partners may use this information for our and their own advertising, analytics, attribution, and reporting purposes. To learn more about interest-based advertising, tracking technologies, and how to opt out, please visit http://www.aboutads.info/choices.

You can control cookies and tracking tools. Your browser may give you the ability to control cookies or other tracking tools. How to adjust these controls depends on the type of tool. Certain browsers can be set to reject browser cookies. If you block cookies, certain features on our websites may not work. If you block or reject cookies, not all of the tracking described here will stop.

Cross-contextual behavioral advertising. To opt out of cross-contextual behavioral advertising, read our Notice of Right to Opt-out of Sharing below. Additionally, the Self-Regulatory Program for Online Behavioral Advertising provides consumers with the ability to manage certain choices online here and provides a tool for managing mobile choices here.

Our Do Not Track Policy: Some browsers have “do not track” features that allow you to tell a website not to track you. These features are not all the same. We do not currently respond to “do not track” requests.

Notice of Right to Opt-out of Sharing: You can opt-out of the sharing of your personal information for advertising by selecting the cookie banner preferences on the website. You can also set-up your browser as we describe in this section. Some browsers or browser extensions also allow you to tell websites not to share your information for targeted advertising through the “global privacy control” signal. We will respond to this signal in a frictionless manner. If you configure this setting on your browser, certain features on our site may not work and you will receive less targeted advertising. To learn how to configure this setting, view here.

If you are a consumer who lives in California or jurisdictions with similar laws, you may have additional rights. Those rights depend on our relationship with you and have certain limitations that are subject to change. This might include if a legal exception applies. If that is the case, we will not be able to process your request.

The rights include the following and may be offered based on your location:

Nevada residents: you may also opt out of the future sale of your information to a third party so that they may license or sell that information by emailing us as noted at the end of this notice.

You can exercise your rights by contacting us via mail or email as described at the end of this policy. When you submit your request, we use the information you provide to verify your request. We do this by matching the information you provide with information we already have about you. In some situations, we may not be able to process your request. This may include if there is a legal exception. If you disagree with our decision you can contact us as described at the end of this policy. We will not discriminate against you because you exercised your rights.

If you are submitting a request on behalf of an eligible resident, we may ask for additional information to verify your identity. This may include providing proof that you are registered with the Secretary of State to act on someone’s behalf or proof of being a power of attorney (POA).

Our websites are meant for adults. We do not knowingly collect personal information from children under 13. If you are a parent or legal guardian and think your child under 13 has given us information, you can contact us at the email or address below. Please mark your inquiries “COPPA Information Request.” Parents can learn more about how to protect children's privacy online here.

We use reasonable security measures as required by relevant law. The Internet is not 100% secure. We cannot promise that your use of our websites will be completely safe. We encourage you to use caution when using the Internet.

Information we collect may be stored and processed in the United States. This website is intended for people who are in the United States. If you live outside of the United States, you understand and agree that we may transfer your information to the United States. The United States may not have the same level of protection as the laws in your country. By submitting your information you agree to have it processed in the United States as allowed by law.

We may link to other company websites. Our websites may also include other company content that collects information. We do not control these third-party websites. This Policy does not apply to the privacy practices of those websites. Please read the privacy policy of other websites carefully. We are not responsible for the practices of these other company websites.

If you have other questions about this Policy or our privacy practices please email us at data.privacy@shionogi.com. You can also write to us at Shionogi Inc., 400 Campus Drive, Florham Park, NJ 07932.

We may make changes or updates to this Policy and will notify you of any material changes to this Policy as required by law. Changes will also be posted on our website. Please check our website periodically for updates.