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U.S. Consumer Health Data Privacy Notice

Egetis Therapeutics AB and its affiliates (collectively “Egetis” or “we”) is a pharmaceutical company focused on the development and commercialization of treatments for serious diseases with significant unmet medical need, particularly in the orphan drug segment. This Policy supplements Egetis’s U.S. Privacy Notice and applies to Consumer Health Data that may be subject to state-specific laws governing that specific type of data.

Purpose and Scope

This Consumer Health Data Privacy Policy describes how Egetis Therapeutics AB and its affiliates (collectively, “Egetis”) collects, uses, and/or processes Consumer Health Data. This Policy applies to Consumer Health Data collected by Egetis through its website(s), digital properties, patient support services, programs, and other interactions with you.

As used in this Policy, “Consumer Health Data” means personal information that is linked or reasonably linkable to a consumer and that identifies the consumer’s past, present, or future physical or mental health status, including but not limited to: (a) individual health conditions, treatment, diseases, or diagnoses; (b) social, psychological, behavioral, or medical interventions; (c) health-related surgeries or procedures; (d) use or purchase of prescribed medications; (e) bodily functions, vital signs, or symptoms; (f) reproductive or sexual health information; (g) biometric data; (h) genetic data; (i) precise location data that could reasonably indicate a consumer’s attempt to acquire or receive health services or supplies; (j) data that identifies a consumer seeking health care services or supplies; and (k) any data that a regulated entity processes to associate or identify a consumer with the above categories.

Consumer Health Data We Collect

Egetis may collect your Consumer Health Data depending on the context of your interactions with us and the choices you make (including your established privacy settings), the services, products, and features you use, and applicable law. Consumer Health Data may include the following categories:

  • Information about your health conditions, symptoms, diagnoses, treatments, and medications, including information collected through patient support programs, adverse event reporting, clinical inquiries, or disease education programs;
  • Genetic data, including information collected in connection with clinical research, in connection with delivery of our products and services, including enrollment in our patient support programs, or diagnostic testing;
  • Biometric data;
  • Reproductive or sexual health information, if applicable;
  • Information that identifies, or could identify, your attempt to seek health-related services, products, or supplies, including through interactions with patient support or disease education resources;
  • Precise location data that could reasonably indicate your attempt to acquire or receive health services, if collected; and
  • Information derived or inferred from any of the above.

For a full list of the categories of Personal Data we collect, please see the “Personal Data We Collect About You” section of our U.S. Privacy Notice.

Sources of Consumer Health Data

Egetis may collect Consumer Health Data from the following sources:

  • Directly from you (e.g., when you enroll in or interact with patient support programs, submit adverse event reports, product quality complaints, or other safety information, request medical or scientific information, request disease education materials, contact us by phone, email, mail, social media, other channels, complete forms on our website(s) or digital properties, or interact with our field-based personnel).
  • Automatically through your interactions with our website(s) and digital properties (e.g., through cookies and similar tracking technologies, as described in the “Cookies and Other Tracking Technologies” section of Egetis’s U.S. Privacy Notice).
  • From third parties and publicly available sources (e.g., healthcare providers, specialty pharmacy and hub service providers, clinical or contract research organizations, clinical trial sites, health institutions, regulatory authorities, patient advocacy organizations, research or business partners, genetic counseling service providers, collaborators, and publicly available databases).

Why We Collect and Use Consumer Health Data

Egetis may use your Consumer Health Data for the following purposes:

1. To operate our website(s) and digital properties and services.

For example, to:

  • process and manage registrations through our website(s) or digital properties;
  • provide information about our research, therapeutic products, programs, services, disease education, or related resources;
  • administer patient support programs and similar services;
  • communicate regarding programs, events, or activities, including sending technical notices, updates, and administrative messages;
  • understand your needs and interests and personalize your experience;
  • provide support and maintenance for our website(s) and digital properties;
  • respond to your requests, inquiries, and questions.

2. To monitor product safety and fulfill regulatory obligations.

For example, to:

  • Collect, receive, document, assess, investigate, and follow up on adverse events, special situation reports, product quality complaints, and other product safety information safety signals as required by the U.S. Food and Drug Administration (FDA) and other regulatory authorities;
  • detect, evaluate, validate, and monitor safety signals and potential risks associated with our medicinal products;
  • comply with pharmacovigilance, product safety, risk management, and post-marketing surveillance obligations required by applicable laws and regulatory authorities, including reporting safety information to regulatory authorities, business partners, ethics committees, healthcare professionals, and other stakeholders where required; and
  • maintain safety databases, conduct safety analyses, prepare aggregate safety reports, respond to regulatory requests, and support activities intended to protect patient safety and public health.

3. To respond to medical information requests and provide scientific support.

  • receive, document, process, and respond to unsolicited requests for medical and scientific information about our products, therapeutic areas, disease states, and related healthcare topics;
  • provide accurate, balanced, and evidence-based medical information to patients, caregivers, healthcare professionals, and other legitimate requestors;
  • maintain records of medical information inquiries and responses for quality, compliance, training, and auditing purposes;
  • identify and appropriately process information that may constitute an adverse event, product quality complaint, special situation report, or other reportable safety information; and
  • improve the quality, consistency, and effectiveness of our medical information services.

4. To send you educational, promotional or marketing communications.

For example, we may send you communications regarding our products, services, offerings, or relevant disease education or related resources as may be permitted by applicable law. You will have the ability to opt out of marketing and promotional communications. We encourage you to consult the “Marketing Use of Your Personal Data” section of our U.S. Privacy Notice.

5. To comply with legal obligations.

For example, we may use your Consumer Health Data as necessary or appropriate to comply with applicable laws, lawful requests and legal processes, such as to respond to requests from government authorities.

6. With your consent.

We may use or share your Consumer Health Data with your express consent. For example, if you consent to participate in a patient support program, enroll in a clinical study, allow us to post your testimonial, or instruct us to take a specific action with respect to your Consumer Health Data, or if you opt into third-party communications for the purposes of marketing and/or provision of products or services, we may use or share your Consumer Health Data as authorized.

7. For compliance, safety and fraud prevention.

For example, we may use your Consumer Health Data as necessary or appropriate to (i) enforce the terms and conditions that govern use of our website(s) and digital properties; (ii) protect legal rights; or (iii) protect, investigate, and deter against fraudulent, harmful, unauthorized, unethical, or illegal activity.

What We Will Not Do with Your Consumer Health Data

Egetis will not do the following:

  • (i) sell Consumer Health Data without your valid authorization;
  • (ii) use your Consumer Health Data for purposes not disclosed in this Policy, unless we receive your consent to do so; or
  • (iii) use geofencing technology around health care facilities to collect Consumer Health Data, identify or track consumers seeking health care services, or send notifications, messages, or advertisements related to your Consumer Health Data.

Third Parties with Which We May Share Your Consumer Health Data

Egetis will not share your Consumer Health Data with third parties without first obtaining your consent or valid authorization, except in the limited circumstances described below or as otherwise permitted by applicable law.

1. Affiliates. Egetis may disclose your Consumer Health Data to Egetis’s subsidiaries and corporate affiliates, including our Swedish parent company, Egetis Therapeutics AB, for purposes consistent with this Policy and Egetis’s U.S. Privacy Notice.

2. Service Providers. Egetis may share your Consumer Health Data with companies and individuals that provide services on our behalf, including patient support service providers, data hosting providers, analytics providers, communications delivery providers, marketing providers, and database management service providers. These parties process Consumer Health Data only as directed by us and in a manner consistent with this Policy and Egetis’s U.S. Privacy Notice. We require contractual commitments from our service providers prohibiting them from selling Consumer Health Data or using it for any purpose other than the specific services contracted for.

3. Clinical Research Organizations and Trial Sites. We may share your Consumer Health Data with Contract Research Organizations and/or Clinical Research Organizations (collectively, “CROs”), clinical trial sites, or other research partners who assist in conducting and managing clinical trials that we sponsor or engage with, subject to applicable informed consent and regulatory requirements.

4. Compliance with Law Enforcement and Related Safety Obligations. We may disclose information about you to government or law enforcement officials or private parties as required by law, and disclose and use such information as we believe necessary or appropriate to (a) comply with applicable laws and lawful requests, such as to respond to requests from government authorities; (b) enforce the terms and conditions that govern use of our website(s) and digital properties; (c) protect the rights, privacy, safety, or property of users of our website(s) and digital properties; and (d) protect, investigate, and deter against fraudulent, harmful, unauthorized, unethical, or illegal activity.

5. Business Transfers. We may sell, transfer, or otherwise share some or all of our business or assets, including your Consumer Health Data, 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, in which case we will make all reasonable commercial and legal efforts to require the recipient to honor the terms of this Policy and Egetis’s U.S. Privacy Notice.

6. Consent and Authorization. Where required by applicable law, Egetis will obtain your consent or valid authorization before collecting, using, or sharing your Consumer Health Data. Any consent or authorization will specify:

  • (i) the categories of Consumer Health Data to be collected, used, or shared;
  • (ii) the purpose(s) for which such data will be collected, used, or shared;
  • (iii) the categories of third parties, if any, with whom the data will be shared; and
  • (iv) how you may withdraw your consent or revoke your authorization.

You have the right to withdraw your consent or revoke your authorization at any time. To do so, please contact us as described in the “How to Contact Us” section below. Withdrawal of consent will not affect the legality of any use of your Consumer Health Data carried out prior to your withdrawal.

Data Security

Egetis has established technical and organizational security measures designed to protect Consumer Health Data against accidental loss, unauthorized access, alteration, disclosure, or destruction. We limit access to Consumer Health Data to those employees, agents, and service providers who have a business need to access such data, and we require that they process it only on our instructions and subject to a duty of confidentiality. For additional information about our security practices, please see the “How We Protect Your Personal Data” section of Egetis’s U.S. Privacy Notice.

Data Retention

We will retain your Consumer Health Data only for as long as reasonably necessary to fulfill the purposes described in this Policy, unless a longer retention period is required or permitted by law (for example, regulatory recordkeeping requirements related to adverse event reporting, clinical research, or pharmacovigilance). For additional information about our retention practices, please see the “How We Retain Your Personal Data” section of Egetis’s U.S. Privacy Notice.

Changes to this Consumer Health Data Privacy Policy

We reserve the right to amend this Consumer Health Data Privacy Policy. If we make material changes that significantly impact your privacy rights, we will notify you by updating the date of this Policy and posting the revised Policy on our website(s) and digital properties. We may, if required by law, also provide notification of changes in a manner reasonably likely to reach you, such as via e-mail (if you have provided your contact information) or through our website(s) and digital properties.

How to Exercise Your Rights

Certain state laws, including but not necessarily limited to enforceable statutory provisions in the states of Washington, Nevada and Connecticut, provide respective residents with specific rights concerning their Consumer Health Data, including:

  • (i) The right to confirm whether Egetis is collecting, sharing, or selling your Consumer Health Data;
  • (ii) The right to access your Consumer Health Data, including a list of all third parties and affiliates with whom we have shared or sold your Consumer Health Data and an active email address or other online mechanism that you may use to contact these third parties;
  • (iii) The right to withdraw your consent for the collection and sharing of your Consumer Health Data;
  • (iv) The right to request deletion of your Consumer Health Data; and
  • (v) The right to be free from discrimination for exercising any of these rights.

To inquire about or attempt to exercise any of these rights, or if you have questions or concerns about this Policy, please contact us as detailed by the “How to Contact Us” section, below. Egetis will respond to verified consumer requests within the timeframes required by applicable law.

If your request is denied, you may be able to request an appeal or to dispute such a decision by contacting us at [email protected].

If your appeal is unsuccessful, you may be able to raise a concern or lodge a complaint directly with your state’s Office of the Attorney General.

How To Contact Us

Email: [email protected]
Mail: Egetis Therapeutics; Attn: Privacy, at 1 Broadway, 14th Floor, Cambridge, Massachusetts, 02142-1187, USA

Last Updated: September 23, 2026

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