Privacy Policy

Ionis respects your privacy, we strive to let you know in advance what will happen to your personal information. We will not use your personal information for a purpose that is materially different from the purposes listed in this notice or disclose your personal information to a third party acting as a controller not previously identified to you, without first offering you the opportunity to opt-in or opt-out as required of such uses and/or provide the appropriate disclosures.

By providing your personal information, you agree that, where it is permitted by local law, we may use your personal information to:

• Communicate with you to personalize your experience through our marketing efforts, including through email, targeted advertising, and website landing pages
• Notify you of our new products and services and to provide you with product news and updates, promotional materials or newsletters, tips, or other helpful information
• Seek your views on our products and services
• Monitor our regulatory compliance
• Respond to your requests
• Improve the content or personalize our communications
• Consider your application for employment
• For our own administrative and quality assurance purposes, such as to perform data analysis to identify usage trends, determine the effectiveness of our promotional campaigns and general operation of our websites
• Improve our level of service
• For other purposes that may be detailed on our websites

When we collect your personal information, we will take reasonable steps to advise you of what personal information we are collecting and the purposes for which we are collecting it. We will use your personal information only for those purposes.

Categories of Personal Information

Personal Information: “Personal data,” or “personally identifiable information (PII)” means any information relating to an identified or identifiable natural person. An identifiable person is one who can be identified, directly or indirectly — in particular, by reference to an identification number or to one or more factors specific to their physical, physiological, mental, economic, cultural, or social identity.

Special Categories of Personal Information: Pertains to personal information that reveals racial or ethnic origin, political opinions, religious or philosophical beliefs, trade union membership and the processing of data concerning health or sexual orientation.

Sensitive Personal Information: Indicates “special categories” or is personal information of which the sensitivity level has been assessed and classified, indicating potential severe impact on an individual when confidentiality of such data is breached. If applicable under California Consumer Privacy Act (CCPA), or other applicable privacy laws, you have the right to limit our use of your Sensitive personal information in certain circumstances. To exercise this right, click the “Limit the Use of My Sensitive Personal Information” button at the bottom of this page.

Personal information Collected from Other Sources: Depending on your interaction with us, Ionis may also collect information about you from other sources to help us correct or supplement our records, improve the quality or personalization of our services to you, and prevent or detect fraud.

Specific Pieces of Personal Information: Depending on your interaction with Ionis, we may collect and process the following specific pieces of personal information:

• Your name, physical address, email address(es), and telephone number(s)
• Your demographic attributes, when tied to personal information that identifies you
• Information you provide on your public social media profiles related to your professional and educational history, such as LinkedIn
• Your transactional data, including any products or services you ordered, your financial details and payment methods
• Company data such as the name, size, and location of the company you work for and your role within the company as well as publicly available company information and activity associated with company data
• Call recording and chat transcript data from Sales and customer support calls
• Unique IDs such as your mobile device identifier or cookie ID on your browser
• IP address and information that may be derived from IP address, such as geographic location
• Information about a device you use, such as browser, device type, operating system, the presence, or use of “apps,” screen resolution, and the preferred language
• Certain location or geolocation information you provide directly or through automated means, if you choose to enable location-based services from your device
• Behavioral data of the internet connected computer or device you use when interacting with the sites, such as advertisements clicked or viewed, sites and content areas, date and time of activities or the web search used to locate and navigate to a site

If you are a health care professional, we may collect additional categories of personal information, as described in this section. The categories of personal information collected, and the purposes of use and disclosure described in this section are in addition to any other collection, use and disclosure of personal information practices described separately in this Privacy Notice.

If you are a health care professional, we may collect your personal information directly from you or from third-party sources, such as the organization where you work, third-party databases, publicly available sources, your interactions with Ionis (including online available sources), and your participation in Ionis sponsored or supported initiatives such as Ionis sponsored clinical research and development activities.

We may collect the following additional categories of personal information about health care professionals:

• Professional details, such as resumes or other documents or forms provided directly to us, place of practice, job title, professional contact details, medical specialty, professional license number, professional qualifications and scientific activities (such as previous clinical trial experience, activity on social media platforms or other websites, and participation in past or pending research studies with us and other companies), organizational or institutional affiliations, publication of academic or scientific research and articles, and membership in associations and boards.
• Personal information provided to participate in our sponsored or supported initiatives, such as our sponsored clinical research and development activities, online or in-person seminars regarding product information, educational events, and clinical information updates.
• Details of interactions with us, such as what kind of meetings we have held, topics discussed, your knowledge of and questions you have had about our business and products, what kind of material we have displayed to you, and any feedback that you have provided, as well as your opinions of and routines for prescribing, routines regarding your patients, diagnoses, and automatic tracking information in online interactions with us. Payment and other transfers of value details received from your interactions with Ionis, which may include your tax identification number or national identification number (where required or permitted by law), contributions to costs of educational events (such as registrations fees, travel, and accommodation expenses) and fees for services, including consultancy services.

We use and disclose personal information of health care professionals for the following additional purposes:

• To perform our contract with you, if you or your institution entered into a consulting, professional services, or other type of agreement with us.
• To manage and improve our relationship with you, including contacting you to plan, organize, and review any collaborations with you, based on our legitimate interests in developing and improving our services.
• To help ensure we provide you with information that is relevant based on your expertise, interests and preferences recruitment and evaluation of the suitability of health professionals for their participation in clinical trials and market research and other research studies.
• To conduct market and research studies in the public and private sectors.
• To communicate with you about our products and programs (subject to any additional marketing consent requirements).
• To engage with you about scientific or educational programs.
• To administer our patient-support programs.
• To respond to product orders, and provide product samples, where applicable.
• To develop and evaluate our products, services, materials, and treatment, for research and analytics purposes.
• For internal accounting purposes in connection with our internal policies and rules.
• To meet our transparency obligations under the US federal Sunshine Act and similar US state and international laws.

Based on our legal obligations and for reasons of public safety, we will use and disclose personal information about health care professionals for safety monitoring, reporting, and auditing and responding to inquiries or issues in relation to our products.

We may collect additional categories of personal information about participants in Ionis’ patient and customer programs including clinical research study trials, as described in this section, including patient support programs. We may also use and disclose personal information about participants in patient and customer programs for the additional purposes described in this section. The categories of personal information collected, and the purposes of use and disclosure described in this section are in addition to any other collection, use and disclosure of personal information practices described separately in this Privacy Notice or in the Informed Consent Form (ICF) associated with the respective clinical research study.

If you are a participant in a patient or customer program or clinical research study trial, we may process the following additional categories of personal information about you, which we received from you directly, or from your health care professionals, health care insurers, and related third parties:

• Contact data such as address, phone number and other contact details
• Personal details such as name, date of birth and gender
• Data collected or created regarding your use of our programs and services
• Sensitive data such as health data relating to your disease or condition, medical history, treatment, reason for continuation or discontinuation, or data on active management of your disease or condition

With your consent, we use and disclose your personal information to administer and manage your participation in the programs, including customization of the programs for you (e.g., the delivery of products and services, reminders to take a product as prescribed or to obtain a refill of a product, provide you with patient programs support including communications and materials related to your disease or condition). We may also contact your health care professional for drug safety information and provide your health care professional with information about your medicine and your participation in a patient program.

Based on our legal obligations and for reasons of public safety, we may use and disclose your personal information in our programs for safety monitoring, reporting, and auditing, and responding to inquiries or issues in relation to our products, as well as to comply with applicable laws and regulations unless your participation in a clinical research study prohibits such disclosures.

We will also use non-Personal information that does not directly identify you for the compatible purposes of analytics, research, and related publications, including to evaluate, develop and improve Ionis’ programs and related services, products, and medicines.

If you have applied for employment with Ionis, the personal information submitted with your job application may include your resume, previous professional experience, education and other background information, cover letter, certifications held, reference information, and any other information that you choose to provide (e.g., employment preferences, willingness to relocate, awards or professional memberships). This information may come from you, a recruiter, your references, prior employers, or your educational institutions. Please refer to our Privacy Notice and Consent for Employment Candidates policy for further details.

We may disclose your Personal information to certain third parties listed below, including third parties who provide us with various business services. We will not sell or share your personal information without your prior consent. We will not otherwise disclose your personal Information without your consent, except where such disclosure is reasonably necessary for normal business operations and such disclosure is in accordance with all applicable data protection and privacy laws.

• Affiliates: We may disclose personal information to our affiliated companies for the purposes described in this privacy notice. Affiliates are those companies that are under common control of our parent company Ionis.
• Third parties/Service Providers: We may disclose your personal information to third-party service providers who provide services to us, such as Ionis websites hosting, professional services, including information technology services and related infrastructure, customer service, e-mail delivery, auditing, and other similar services. We may also disclose your personal information to third parties to perform services you request or functions you initiate on our websites. In addition, we may disclose your personal information to other companies that we collaborate with to jointly develop and/or market our products and services. If we allow a third party to have access to your personal information, they will only be permitted access for purposes that are consistent with this privacy notice and will be required to protect your personal information in accordance with all applicable data protection laws.
• Interest-Based Advertising, Behavioral and Targeted Advertising: We may ourselves, or with third-party vendors, use non-personal information in connection with our own or vendor information to deliver targeted advertising to you when you visit other websites or our site. For example, if you are searching for information on a particular product, we or our vendor may cause an advertisement to appear on other websites you view with information on that product. This form of advertising, sometimes called “behavioral advertising,” is not based on any information that specifically identifies you. As a result, we and our vendor know your interests, but do not personally identify you in connection with the delivery of that specific ad. We believe that such advertising is helpful because you will see advertisements that are relevant to your interests. However, if you would like to opt out of these interest-based advertisements, please follow the opt-out process described below in the ‘Exercise Your Rights’ section.
• Social Media Engagement: Our websites include social media features, such as the Facebook Like button and other widgets that run on our site. These features may collect your IP address and which page you are visiting on our site and may set a cookie to enable the feature to function properly. Social media features and widgets are either hosted by a third party or hosted directly on our site. Your interactions with these features are governed by the privacy notice of the organization providing it. For example, if you create or log into your account through a third-party social networking site, we may have access to certain information from that site, such as your name, account information and friends, in accordance with the authorization procedures determined by such third-party social networking site. We may also collect information about you from other sources to help us correct or supplement our records, improve the quality or personalization of our services to you, and prevent or detect fraud. We work closely with third parties (for example, business partners, service providers, sub-contractors, advertising networks, analytics providers, search information providers, fraud protection services) in an effort to constantly improve our products and services and may receive information about you from them.
• Law Enforcement: In certain circumstances, we may be called upon to release your personal information in response to a court order, subpoena, search warrant, law, or regulation. We plan to cooperate in responding to such requests, taking appropriate measures to ensure that the requester understands the sensitive nature of the personal information that they may receive. We also reserve the right to cooperate with law enforcement authorities in investigating and prosecuting users who violate our rules or engage in behavior that is illegal or harmful to individuals or the personal information we are responsible for.
• Other Legal Reasons: In addition, we may use or disclose your personal information as we deem necessary or appropriate: (1) under applicable law, including laws outside your country of residence; (2) to respond to requests from public and government authorities including public and government authorities outside your country of residence; (3) to comply with subpoenas and other legal processes; (4) to pursue available remedies or limit damages we may sustain; (5) to protect our operations or those of any of our affiliates; (6) to protect the rights, privacy, safety or property of Ionis, our affiliates, you and others; and (7) to enforce our terms and conditions.
• Regulators and Physicians: If you contact us regarding your experience using one of our products, we may use the personal information you provide as necessary to submit complaints or adverse event reports to local and international health or pharmaceutical regulators, and as otherwise required by law. We also may use the personal information to contact the prescribing physician to follow up regarding an unexpected event involving use of our product.
• Corporate Transactions: We may disclose your personal information to a third party relating to a corporate reorganization, merger, sale, joint venture, assignment, transfer or other disposition of all or any portion of our business, assets, or stock, including regarding any bankruptcy or similar proceedings.

We provide you with certain rights regarding your personal information, subject to certain exceptions and limitations. Those rights include:

1. Right to request access to the personal information we have collected about you, restrict the processing of specific pieces of personal information we collected about you and learn how we collect this information, our purpose in collecting it
2. Right to correct or delete the personal information we have collected from you
3. Right to opt-out of the sale or sharing of your personal information
4. Right to limit use and disclosure of sensitive personal information
5. Right to data portability
6. Right not to receive discriminatory treatment for the exercise of relevant privacy rights conferred by applicable laws

Under the California Privacy Rights Act of 2020 (CPRA), residents of California may exercise employee rights. If applicable, we provide employees with certain rights regarding your personal information, subject to certain exceptions and limitations.

If you are in the European Union or United Kingdom, you have the following rights under GDPR:

1. Right to request access to the personal information we have collected about you, restrict the processing of specific pieces of personal information we collected about you and learn how we collect this information, our purpose in collecting it
2. Right to rectification/correction of your personal information
3. Right to erasure of your personal information (right to be forgotten)
4. Right to restriction of processing of your personal information
5. Right to data portability
6. Right to object to the processing of your personal information for profiling or automated decision making
7. Right to withdrawal of your consent at any time.

Below please find further information on your rights to the extent that the GDPR applies. Please note that these rights might be limited under the applicable local data protection law.

To submit requests related to your privacy rights, you may contact us as at [email protected]. You also may designate an authorized agent to make a request for access on your behalf. We reserve the right to deny requests as permitted by law. Your exercise of these rights will have no adverse effect on the price or quality of our products or services. We do not discriminate against individuals who have exercised one or more of these rights.

We may require additional information from you to verify your identity and residence before we can process your request. We also reserve the right not to restrict access to your information or to limit your rights (e.g., if such disclosure is prohibited by law or if the rights of another individual might be violated). In some instances, this may mean that we are able to retain your personal information even if you withdraw your consent.

If you wish to stop receiving e-mails or other communications from us, or if you have submitted personal information through our websites and would like that information deleted from our records, please notify us at [email protected]. Please note that we reserve the right not to remove or amend information provided to us regarding an adverse drug event or any information that we are otherwise required to retain by law or regulation.

If you wish to lodge a complaint with a supervisory authority outside of the United States, you may contact the necessary supervisory authority

We will not take any action that will have a significant impact on you based on automated decision-making unless we have a lawful basis for doing so and we have notified you.

Some web browsers may transmit “do-not-track” signals to our websites with which the browser communicates. Our websites do not currently respond to these “do-not-track” signals.

Cookies keep track of your visits to websites and activity online. A cookie is a small piece of data that is stored on your computer, tablet, or phone. Ionis uses cookies and similar technologies to improve our services. Depending on the applicable laws of the region where you are located, you can choose not to allow some type of cookies. If you are a resident of EEA, UK or Switzerland, your browsers’ settings may be set to decline cookies and alert you to opt-in when a website is attempting to place a cookie on your computer. You can always change your cookie preferences by clicking the Manage My Cookie icon on the bottom banner of all Ionis webpages. However, blocking some types of cookies may impact your experience of the site and the services we are able to offer.

To find out more about cookies, including how to see what Cookies have been set on your device and how to manage and delete them, visit www.allaboutcookies.org.

When your browser or device allows it, we use both session cookies and persistent cookies to better understand how you interact with our services, to monitor aggregate usage patterns and to personalize and otherwise operate our services such as by providing account security, personalizing the content we show you.

Different web browsers may use different methods for managing cookies. Please follow the instructions below, from the web browser manufacturers directly, to configure your browser settings.

• Adobe Analytic Opt-Out
• Apple Safari
• Google Analytics opt-out browser add-on
• Google Chrome
• Microsoft Edge
• Mozilla Firefox

Internet Tags: Occasionally, we may use internet tags (also known as web beacons, action tags, single-pixel GIFs, clear GIFs, invisible GIFs, and 1-by-1 GIFs) on our websites. Cookies and internet tags are placed on different pages throughout our websites. We also use them to measure responses to our websites . We may deploy cookies and internet tags through our analytical service partners.

Social Plugins: Our websites may also use social plugins (e.g., the LinkedIn “Like” button) to enable you to easily share information with others through social media. When you visit our websites, the operator of the social plugin may be able to place a cookie on your computer, enabling that operator to recognize individuals who have previously visited our websites. For further details about the information shared via a social plugin, you should refer to that social media platform’s privacy statement.

Analytics: Our websites use Google Analytics, which uses cookies to analyze use patterns and may collect information about your use of our websites, including your IP address. More information on Google Analytics can be found at: www.google.com/policies/privacy/partners/.

Cookie Tables

1. FCS Focus
2. HATTR Matters
3. Ionis
4. Ionis Trials
5. Know Your TG’s
6. TG Aware

Our legal basis for processing personal information collected about you is the following:

As a global company, Ionis conducts business in many countries. Ionis may transfer your personal information to subsidiaries or affiliate companies that are outside your country of residence and such transfers may include transfers to a country where the laws provide different protection from your country. In such cases, we will take appropriate measures to ensure adequate data protection in accordance with applicable data protection laws.

For personal information covered by the GDPR or for transfers of Personal information to a third country outside the European Union (EU), European Economic Area (EEA), the United Kingdom (UK) or in absence of an adequacy decision, we rely on EU Standard Contractual Clauses, and the International Data Transfer Agreement (IDTA), the international data transfer addendum to the European Commission’s standard contractual clauses for international data transfers (Addendum).

Your personal information may be processed by manual and automatic means and stored in our internal database for the number of years as may be legally required in some jurisdictions and in accordance with local laws and our document retention policies. The data may be stored for as long as it is necessary to satisfy our legitimate business interests, legal or contractual obligations, the retention time specified in your consent, or in order to establish, exercise, or defend legal claims.

While Ionis makes reasonable appropriate efforts to protect the personal information collected through our websites, please be aware that there is always some risk involved when submitting data over the Internet. We cannot guarantee that our websites are 100% safe from illegal tampering or “hacking.” Any data transmitted over the Internet may be at risk.

Our websites are not intended for, or designed to attract, children under the age of 13. As noted above, we do not collect personally identifiable information unless you provided it to us – including an individual’s age.

Our websites may contain links to other sites that may offer information related to an inquiry, such as various patient or advocacy organizations. As stated in more detail in the Legal Notice & Terms of Use for our websites, these sites are not controlled or maintained by us, and the policies and procedures we described here may not apply to those sites. You should review the terms of usage and other conditions of use posted on those sites to determine the policies and procedures that apply to those sites. We supply these links only as a convenience to you. By linking to any other websites, you acknowledge that you do so at your own risk, and you are responsible for learning about and complying with the terms of usage and other conditions posted on those websites.

Ionis may, at any time, revise this Privacy Notice by updating this posting. Data will be handled in accordance with the notice in effect at the time the data is collected

You may contact Ionis with any questions, concerns, or inquiries about this Privacy Notice or to make a formal complaint. Please contact [email protected]. All complaints will be evaluated and responded to appropriately. In some instances, Ionis may have to cease services to you if necessary to satisfy your request.

To report an adverse event or safety concern with use of an Ionis product, please call (800) 491-2664. If you or the patient who took Ionis product are experiencing a medical emergency, please dial emergency services such as 911 or 112. For any other assistance, please call our Corporate Headquarters: (760) 931-9200 or email [email protected].