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U.S. Privacy Notice

Egetis Therapeutics AB and its affiliates (collectively “Egetis” or “we”) recognize and respect the privacy rights of individuals regarding their Personal Data and are committed to complying with all applicable data privacy laws. When we address “Personal Data,” we mean any information relating to an identified or identifiable living natural person.

This U.S. Privacy Notice applies to U.S. residents and to other individuals whose Personal Data is subject to applicable U.S. privacy laws. It covers information we collect about you through our interactions with you, including when you visit our website(s) or engage with our other digital properties. This U.S. Privacy Notice explains what types of Personal Data we may collect from you; how and why that data is collected, used, processed and protected; as well as how to exercise any privacy rights you may have with respect to the management of your Personal Data.

Updates to this U.S. Privacy Notice

We may update this Privacy Notice from time to time. Please check this Notice periodically for any changes. When we materially update this U.S. Privacy Notice or our Privacy Notice, we will take appropriate measures to inform you, consistent with the significance of the changes we make. You can see when this U.S. Privacy Notice was last updated by checking the “last updated” date displayed at the bottom of this Notice.

How to Contact Us

For questions concerning this U.S. Privacy Notice or our privacy-related practices, please contact us at: [email protected] or at 1 Broadway, 14th Floor, Cambridge, Massachusetts, 02142-1187, USA, Attn: Privacy.

The Personal Data We Collect About You

Egetis may collect, use, store, process, and/or share Personal Data from the following broad categories:

  • Identity Data: Includes, for example, name, marital status, title, social security or similar national identification number, date of birth, and gender.
  • Contact Data: Includes, for example, physical address, billing address, email address, and telephone number(s).
  • Financial Data: Includes, for example, bank account, payment card details, insurance information, and payroll data.
  • Transaction Data: Includes, for example, details related to payments and other details regarding services you have provided to or received from Egetis.
  • Technical Data: Includes, for example, internet protocol (IP) address, login data, browser type and version, time zone and location settings, browser plug-in types and versions, operating system, platform, and other technology on the devices you use to access the Egetis website(s) and properties.
  • Profile Data: Includes, for example, your username and password to access any authenticated area of our website(s), your preferences, and feedback and survey responses.
  • Usage Data: Includes, for example, information about how you use our website, products, and services.
  • Marketing and Communications Data: Includes, for example, your preferences in receiving materials regarding our products and services communications from Egetis and our third parties in addition to your communication preferences.
  • Sensitive Categories of Personal Data: Includes information that most people would consider sensitive, for example, details about your race or ethnicity, information about your health, and genetic and biometric data. Given its nature, this particular type of data is subject to heightened protection and treatment so it will only be processed as expressly permitted by applicable law.

How We Collect Personal Data About You

1. Information that you provide to us directly and voluntarily

You may choose to interact with us directly by completing forms or corresponding with us by electronic or written means or even by speaking to us over the phone. For example, you might sign up to receive clinical, educational, disease awareness, promotional or other information from Egetis or about one of our offerings; you might sign-up for our patient support services or programs; you might send us unsolicited information; you might otherwise express interest in participating in our offerings or research programs; you may be a potential or existing employee, contractor, consultant, partner or service provider who may be engaged for business reasons, for example, a genetic counseling service provider or vendor.

During such interactions we will ask you to provide certain information voluntarily, which may include various categories of data like Identity Data, Contact Data, and in some instances, Sensitive Categories of Personal Data.

2. Information that we collect automatically

When you visit and interact with our website(s) or digital properties, we may collect certain information automatically from you and about you, such as Technical Data, which may include information from your device, like your IP address, device type, unique device identification numbers, browser-type, preference settings, broad geographic location (e.g., country or city-level location) and other technical information. Some of this information is collected using cookies and similar tracking technologies. Collecting this information enables us to better understand who comes to our website(s) and properties, where they come from, and what content may be of interest to them. We use this information, including information collected using such technologies, for our internal analytics and marketing purposes, to improve the quality and relevance of our website(s) and digital properties to our visitors, to track and respond to concerns, and to comply with regulatory monitoring and reporting obligations. You can find more information about our use of cookies and other tracking technologies in our “Cookies and Other Tracking Technologies” section.

3. Information we receive from third parties or from publicly available sources

We may receive categories of Personal Data about you from various third parties and/or public sources, such as:

  • Technical Data from analytics providers (such as, for example, Google), advertising networks, and search information providers.
  • Contact Data, Financial Data, and Transaction Data from providers of technical, payment, and delivery services.
  • Identity Data and Contact Data from publicly available sources.
  • Sensitive Categories of Personal Data, which may include health data from, for example, our service providers, collaborators, research or business partners who assist us in our work and the services or offerings we may provide.

How We Use Your Personal Data

Egetis and/or our service providers may use your Personal Data for various relevant purposes including, for example, to:

  • Communicate with you;
  • Provide you with offerings or services for which you expressed interest;
  • Help us develop additional offerings and services that are likely to be of interest to you or others like you, or those you care for;
  • Investigate or respond to issues such as adverse events, product quality and other complaints, security threats or preventative measures against bad actors;
  • Help us evaluate and modify our existing offerings, products and services;
  • Comply with or fulfill a request that you have made or inquiry you submit;
  • Maintain and develop our business or professional relationship with you (as applicable);
  • Conduct aggregate statistical studies and research related to our offerings, products and services and the use of websites and/or digital properties so that we can discover and understand relevant trends and needs;
  • Recognize you and allow you to log-on to certain pages, sites, features and/or portals for which you have registered;
  • Exercise our legal and regulatory rights and obligations, including taking actions in furtherance of study participant safety; and
  • Conduct and evaluate certain audits.

Marketing Use of Your Personal Data

We strive to provide you with choices regarding Personal Data uses, particularly around your relationship with Egetis and communications related to us, our products, offerings and services. We may use your categorized Identity Data, Contact Data, Technical Data, Usage Data, and Profile Data to form a view on what we think you may want or need, or what may be of interest to you. This is part of how we decide which services and materials may be relevant for you. To accomplish those goals, we may establish the following Personal Data control mechanisms:

  • Opting in. You will receive certain communications from us if you have requested information from us and opted-in to receive such communications.
  • Consent to third-party marketing. We will not share your Personal Data for marketing purposes with any company outside of Egetis and our service provider network unless you provide your express opt-in consent to do so.
  • Opting out. You can ask us or third parties to stop sending you marketing messages at any time by following the opt-out links on any marketing message sent to you. Remember, however, that even if you opt-out of receiving these marketing communications, Egetis will still communicate with you to provide an offering that you request.
  • Online Analytics. Egetis may use third-party web analytics services (such as, for example, Google Analytics) on our website(s) or digital properties to collect and analyze the information discussed in this Notice, and to engage in auditing, research or reporting. The information collected by various analytics technologies, which may include various types of Technical Data, will be disclosed to or collected directly by these service providers, who evaluate information, including by noting the third-party website(s) from which you arrive, analyzing usage trends, assisting with fraud prevention, and providing certain features to you. To prevent Google Analytics from using your information for analytics, you may install the Google Analytics Opt-Out Browser Add-On.

How We Share Your Personal Data

We do not sell or share your Personal Data, as those terms are defined under applicable U.S. state privacy laws. We may disclose your Personal Data with the following categories of parties for the purposes described in this Notice:

  • Internal and Affiliated Parties: Individuals or groups within our company or within our family of affiliates or related corporate entities.
  • Partners: Entities, service providers, consultancies or academic institutions, with whom we have formal professional relationships.
  • External Third Parties: Entities or individuals whose services we have formally retained to perform services on our behalf and help further our business requirements, including without limitation, for professional services, research, communications, technological maintenance, data storage, system administration, and data analysis and processing.
  • Clinical Research Organizations and Trial Sites: Contract Research Organizations and/or Clinical Research Organizations (collectively, “CRO”), clinical trial sites, or other service partners who assist in conducting and managing clinical trials that we sponsor or engage with.
  • Parties as part of a business transaction: Third parties to whom we may choose to sell, transfer, or merge parts of our business or our assets. If a change happens to our business, then the new owners may use your Personal Data in the same way as set out in this Privacy Notice.
  • Government Authorities: Government agencies, regulators and authorities as may be advisable under or required by law.
  • Specialty Pharmacies and Distribution Partners: Specialty pharmacy providers and pharmaceutical distribution partners who dispense our products, manage patient enrollment and intake, coordinate prescription fulfillment, and provide related logistics and distribution services.
  • Patient Support Program Providers: Third-party service providers who administer patient support programs on our behalf, including benefits verification, prior authorization support, copay assistance, adherence monitoring, and related patient services.
  • Health Insurance Plans, Pharmacy Benefit Managers, and Payers: Health insurance plans, pharmacy benefit managers, government payers, and similar entities as necessary to facilitate benefits verification, prior authorization, claims processing, and appeals related to our products.
  • Advertising and Analytics Providers: Third-party advertising networks, analytics services, and marketing technology platforms that assist us in delivering and measuring the effectiveness of our digital advertising and online content, as further described in our “Cookies and Other Tracking Technologies” section.
  • Professional Advisors: Law firms, auditors, accountants, tax advisors, and other professional advisors retained by Egetis in connection with legal, financial, regulatory, or compliance matters.

We require our vendors and service providers to protect your Personal Data through appropriate contractual, technical, and organizational safeguards and to process such data only for the purposes for which it was disclosed.

Why We Process Your Personal Data

Egetis will only collect, process, and use your Personal Data where applicable laws allow us to do so. Simply put, we will do so only when (i) we have your consent to do so; (ii) for our legitimate business operations; (iii) to provide a service you request; (iv) to protect vital interests or safety; or (v) to comply with legal or regulatory obligations. Depending upon the specific purpose(s) for which we are using the Personal Data, we may process your Personal Data based upon more than one legitimate business interest or lawful basis. Our primary legitimate interests include the research, development, production and promotion of the innovative treatment of serious diseases with significant unmet medical need in the orphan drug segment.

If you have questions about or need further information concerning how we collect and process your Personal Data, please contact us using the contact details provided under the “How to Contact Us” section of this Notice.

How We Protect Your Personal Data

As to Egetis’ systems, we have established technical and organizational security measures to reduce the risk of your Personal Data being accidentally lost, impermissibly altered, disclosed, used, or accessed in an unauthorized way while it is under our control. As to Egetis’ systems, we limit access to your Personal Data to those employees, agents, designees, and other third parties who have a business need to do so. Those parties will only process your Personal Data on our instructions, and they are subject to a duty of confidentiality.

We have implemented reasonable procedures to guard against and address data breaches. In the unlikely event of a breach implicating your Personal Data that requires notification, we will do so and fulfill our related legal obligations.

Cookies and Other Tracking Technologies

When you visit any website, it may store or retrieve information on your browser, mostly through the use of cookies or other tracking technologies. This information might be about you, your preferences or your device and is mostly used to make the site work as you expect it to. Because we respect your right to privacy, you can choose not to allow some types of cookies. For more information regarding cookies and similar tracking technologies, please visit our Cookie Policy. If you want to change the cookies you consented to, please open the website’s cookie settings, which are linked there.

“Do Not Track” and Global Privacy Control Signals

Some web browsers may transmit “do-not-track” signals to websites with which the browser communicates. Our websites do not currently respond to these “do-not-track” signals, but we will recognize and honor Global Privacy Control signals where required by applicable law.

Use of Artificial Intelligence and Emerging Technologies

Egetis may use certain tools and technologies, including artificial intelligence (AI) based solutions, in connection with our products, services and operations. Where Personal Data is processed by these technologies, such processing is limited to the purposes described in this Privacy Notice and/or any supplemental privacy notices provided at the time of data collection.

Egetis will not use AI or other automated technologies to make decisions that may produce legal or similarly significant effects concerning you, except in limited circumstances where:

  • You have been clearly informed of such automated processing,
  • The processing is permitted by applicable law, and
  • You are provided with meaningful information about the logic involved, as well as the opportunity to request human intervention or review.

How We Retain Your Personal Data

We will only retain your Personal Data for as long as necessary to fulfill the purposes we collected it for, including for the purposes of satisfying any legal, accounting, or reporting requirements. To determine the appropriate retention period for Personal Data, we consider the amount, nature, and sensitivity of the Personal Data, the potential risk of harm from unauthorized use or disclosure of your Personal Data, the purposes for which we process your Personal Data and whether we can achieve those purposes through other means, and the applicable legal requirements.

In some circumstances we may anonymize your Personal Data (so that it can no longer be associated with you) in which case we may then use the resulting information without further notice to you.

Acquisition or Sale of Business

We may sell, transfer, or otherwise share some or all of our business or assets, including your Personal Data and/or Consumer Health Data (as defined in our US Consumer Health Data Privacy Notice), in connection with a business transaction (or potential business transaction) such as a merger, consolidation, acquisition, reorganization or sale of assets or in the event of bankruptcy or similar event such as an assignment for the benefit of creditors. In such an event, Egetis will make all reasonable commercial and legal efforts to require the recipient to honor the terms of this Privacy Notice.

Your Privacy Rights

Depending upon your state of residency and other factors, you may have certain rights concerning the collection and use of your Personal Data. Those rights may include, for example, (i) the right to know and/or access your Personal Data; (ii) the right to request deletion of your Personal Data; (iii) the right to request correction of any inaccuracies reflected in your Personal Data; (iv) the right to opt out of the sale or sharing of your Personal Data or marketing-related activities; and (v) the right to non-discrimination for the exercising of such rights. Residents of certain U.S. states may have additional privacy rights under applicable state law.

To inquire as to or to exercise any such right that may be applicable, please contact us as described in the “How to Contact Us” section.

Cross Border Data Transfers

In certain circumstances, your Personal Data may be transferred outside the borders of the United States and processed in other countries. Egetis has established safeguards, including contractual, technical and administrative controls, to ensure the security and processing of such data in conformity with this Notice.

Effect of other Privacy Notices or Statements

Egetis may publish additional privacy notices or statements that are tailored for the different ways your Personal Data is collected or used, and which may be addressed to specific audiences. For example, clinical trial participants are provided with separate notices related to their Personal Data collected in relation to such trials. If you receive a privacy notice or statement provided to you for a specific purpose, the terms of the more specific document will control to the extent that they may differ from this Privacy Notice.

Links to Other Websites

Egetis may include links to other sites on our websites or digital properties. The inclusion of any such links does not imply our endorsement of the linked site or service. Egetis is not responsible for content that may exist on third party websites or properties. When you click on one of these links, you will be transferred away from our website or property and be connected to the site of the organization or company that you selected. At such point, this Privacy Notice will not apply to your activity on the non-Egetis website or property. Each of these linked sites maintains its own independent privacy policies and procedures, which you should consult before providing any of your Personal Data.

Please note that linked third-party websites may also use cookies or other tracking technologies. We cannot control the deployment or use of cookies or other tracking technologies by any such third-party website. If you have any questions about how third-party websites use cookies, you should contact such third parties directly.

Children’s Privacy

Our website(s), digital properties and online services are not directed to children under the age of 18. Egetis does not intend our website(s) or online services to be used by anyone under the age of 18 and we do not provide online services, products or features likely to be accessed by children. In some limited instances, we may collect Personal Data about individuals under the age of 18, but we will do so only with the proper consent of a parent or guardian as may be required by law. We do not otherwise knowingly collect or solicit data about or from children without the express consent of a parent or guardian.

If a parent or guardian becomes aware that their child has provided us with Personal Data without proper adult consent, they should contact us as described in the “How to Contact Us” section. In such an event, we will take reasonable steps to delete such data.

We do not knowingly collect Personal Data from children under the age of 13 without verifiable parental consent. If we learn that we have collected Personal Data from a child under 13 without proper consent, we will take prompt steps to delete that data. If you believe a child under 13 has provided us with Personal Data, please contact us as described in the “How to Contact Us” section.

Last Updated: September 23, 2026

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