Consumer Health Data Privacy Policy

 

Effective Date: October 1, 2025 
Click here to view our full Privacy Policy.

 

Introduction 
Ionis is committed to protecting the privacy of your Consumer Health Data. “Consumer Health Data” refers to information that is linked or reasonably linkable to you and that identifies your past, present, or future physical or mental health status. 

 

This Privacy Policy supplements our main website privacy notice and describes how we collect, use, disclose, and protect Consumer Health Data in accordance with applicable laws in connection with this website and any of our other websites, mobile applications, or online services that link to this Privacy Policy (collectively referred to as the “Sites”). 

Scope
This policy applies to any Consumer Health Data that we collect from you. 

Categories of Consumer Health Data We Collect
We may collect your Consumer Health Data depending on the context of your interactions with us, the choices you make (including your privacy settings), the products and features you use, and applicable laws. Because applicable laws define Consumer Health Data broadly, many of the categories of data we collect may, in some instances, be considered Consumer Health Data. It may include: 

  • Your transactional data, including any products or services you ordered from Ionis, your financial details and payment methods
  • Call recording and chat transcript data from customer support calls and sales-related interactions
  • 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
  • Information about your health-related conditions, symptoms, status, diagnoses, testing, or treatments (including procedures, medications, or other interventions). For example, we may collect such information through surveys or other communications with you for research studies Information that could identify your attempt to seek health-related services or information
  • Other information that may be used to infer or derive data related to the above or other health information 

How We Collect Consumer Health Data 
When we collect your Consumer Health Data, we will take reasonable steps to advise you of what Consumer Health Data we are collecting and the purposes for which we are collecting it. We may collect such information directly from you, through your use of our services, via tracking technologies, or from third-party partners (with consent). 

Purpose of Collection and Use 
By providing your Consumer Health Data, you agree that, where it is permitted by local law, we may use it to: 

  • Notify you of our new products and services and 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 content or personalize our communications
  • 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 

We collect and use Consumer Health Data for the following purposes: 

  • To provide and improve our products and services. We may use your Consumer Health Data to:
    • Process and manage registrations you make through our Sites
    • Provide information about our research and development
    • Communicate with you regarding our programs, events, or activities for which you may have registered, including by sending you technical notices, updates, security alerts, and support and administrative messages
    • Understand your needs and interests, and personalize your experience with our Sites
    • Provide support and maintenance for our Sites
    • Respond to your service-related requests, questions and feedback
  • To comply with legal obligations. 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.
  • With your consent. We may use or share your Consumer Health Data with your consent, such as when you consent to let us post your testimonials or endorsements on our Sites, you instruct us to take a specific action with respect to your Consumer Health data, or you opt in to third-party marketing communications.
  • For marketing or research purposes. We may send you communications regarding our therapeutic products. You have the ability to opt out of marketing and promotional communications. We encourage you to consult our main Privacy Policy for more information about the methods to opt out of such processing. 

We do not use Consumer Health Data for discriminatory purposes or profiling that could adversely affect you. See the Consumer Rights section below for more details on the controls and choices you may have. 

Sharing of Consumer Health Data 
We do not share your Consumer Health Data with third parties without your consent, except in the following circumstances: 

  • Affiliates: We may disclose Consumer Health Data 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 Consumer Health Data 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 Consumer Health Data to third parties to perform services you request or functions you initiate on our websites. In addition, we may disclose your Consumer Health Data 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 information, they will only be permitted access for purposes that are consistent with this Privacy Policy and will be required to protect your Consumer Health Data 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. You can opt out at any time by contacting us.
  • 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 Policy 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 Consumer Health Data 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 Consumer Health Data 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 Consumer Health Data we are responsible for.
  • Other Legal Reasons: In addition, we may use or disclose your Consumer Health Data as we deem necessary or appropriate: (1) under applicable law; (2) to respond to requests from public and government authorities including public and government authorities; (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 Consumer Health Data 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 Consumer Health Data to contact the prescribing physician to follow up regarding an unexpected event involving use of our product.
  • Corporate Transactions: We may disclose your Consumer Health Data 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 do not sell your Consumer Health Data in our day-to-day business operations. 

Consumer Rights
You may have the following rights: 

  • Right to Access: You may request a copy of your Consumer Health Data that we have collected.
  • Right to Deletion: You may request deletion of your Consumer Health Data, subject to certain legal exceptions.
  • Right to Withdraw Consent: You can withdraw your consent to collection or sharing at any time.
  • Right to Know: You have the right to know what categories of Consumer Health Data we collect and why.
  • Right to Appeal: If we deny a rights request, you have the right to appeal our decision. You can raise a concern or lodge a complaint with the Washington State Attorney General at www.atg.wa.gov/file-complaint or the Nevada State Attorney General at https://ag.nv.gov/Complaints/File_Complaint, depending on your state of residence. 

You may exercise these rights by contacting us at privacy-info@ionis.com or through our Your Privacy Choices portal. 

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

Data Retention
Your Consumer Health Data 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 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. 

Minors’ Data
Our Sites are not intended for, or designed to attract, children under the age of 13. 

Changes to This Policy
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. 

Contact Us
You may contact Ionis with any questions, concerns, or inquiries about this Privacy Notice or to make a formal complaint. Please contact privacy-info@ionis.com. 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.