Zevra Therapeutics, Inc. Privacy Policy

Zevra Therapeutics, Inc. and its affiliates (“Zevra,” “we,” “us,” or “our”), provides this website for general information and educational purposes only. This Privacy Policy is designed to help you understand how we collect, use, process, and share your personal information, and to help you understand and exercise your privacy rights.

As used in this Privacy Policy, “personal information” has the meaning given to it under the law where you live, but typically refers to information that can be used to identify you as an individual; meanwhile our activities taken with respect to your personal information are referred to as “processing.”  For residents of California and other U.S. states with special privacy rights, additional disclosures are available below.

1. SCOPE AND UPDATES TO THIS PRIVACY POLICY.

2. PERSONAL INFORMATION WE COLLECT.

3. HOW WE USE YOUR PERSONAL INFORMATION.

4. HOW WE DISCLOSE YOUR PERSONAL INFORMATION.

5. YOUR PRIVACY CHOICES AND RIGHTS.

6. SECURITY OF YOUR INFORMATION.

7. INTERNATIONAL DATA TRANSFERS.

8. RETENTION OF PERSONAL INFORMATION.

9. CHILDREN’S INFORMATION.

10. OTHER PROVISIONS.

11. CONTACT US.

12. NOTICE AT COLLECTION AND SUPPLEMENTAL NOTICE FOR RESIDENTS OF CERTAIN U.S. STATES.

1. SCOPE AND UPDATES TO THIS PRIVACY POLICY

This Privacy Policy applies to personal information processed by us, including on our websites, applications, connected devices, and other online or offline offerings (collective, the “Services”).

Zevra may provide additional privacy notices to individuals at the time we collect their personal information. For example, we may provide a specific privacy notice to participants that describes our privacy practices in connection with conducting clinical trials or when you submit your information for recruitment to one of our clinical trials. These additional privacy notices may supplement this Privacy Policy or may apply in lieu of this Privacy Policy. Job applicants and workers should view our Applicant and Worker Privacy Notice.

Changes to our Privacy Policy. We may revise this Privacy Policy from time to time in our sole discretion. If there are any material changes to this Privacy Policy, we will notify you as required by applicable law, such as by sending you an email. If you continue to access the Services after the new Privacy Policy takes effect, we will assume you have read and acknowledged the new policy.

2. PERSONAL INFORMATION WE COLLECT

The categories of personal information we collect depend on how you interact with us, our Services, and the requirements of applicable law. We collect information that you provide to us, information we obtain automatically when you access our Services, and information from other sources such as third-party services and organizations, as described below.

A. Personal Information Provided to Us Directly

We may collect personal information provided to us in various ways. 

• Healthcare Professionals. If you are a healthcare professional, we may collect personal information such as your professional contact information, credential and institutional affiliations information, information about our programs and activities in which you have participated, information about our interactions with you, information about your published papers, your photograph, information about your prescribing of our products and services, and information contained in agreements executed with us.
• Enrollment and Clinical Trial Referral Information. If you enroll in certain services, such as our patient support programs, or if you request to be matched to one of our clinical trial sites through one of our referral websites, we may collect personal information such as your name, email address, phone number, physical address, date of birth, and relevant information about your medical history.
• Clinical Trial Participants. If you participate in clinical trials that we sponsor, our clinical trial sites may collect personal information such as your driver’s license, passport number, tax identification number, health information related to your medications, medical history, medical insurance details, physical and mental health conditions, diagnoses, treatments, genetic information, and family medical history, and other relevant information in connection with your participation in clinical trials. Please note that the clinical trial site may be a separate “controller” or “business” of your personal information and your personal information may be subject to the clinical trial site’s privacy policy. We collect personal information about you from clinical trial sites only where you have provided your consent to disclose that information to us or as required by law.
• Regulatory Information. We may collect personal information where required to comply with regulatory requirements, including information relating to adverse events related to the use of our products.
• Patient Advocates. If you are a patient advocate, we may collect personal information such as your name, email address, and phone number.
• Your Communications with Us. We may collect personal information, such as email address, phone number, or mailing address when you request information about our Services, register for information from us, contact us with questions or to request customer support, or otherwise communicate with us.
• Conferences, Trade Shows, and Other Events. We may collect personal information from individuals when we attend or host conferences, trade shows, and other events.
• Business Development and Strategic Partnerships. We may collect personal information from individuals and third parties to assess and pursue potential business opportunities.

 

B. Personal Information Collected Automatically

We may collect personal information automatically when you use our Services.

• Automatic Collection of Personal Information. We may collect certain information automatically when you use our Services, such as your Internet protocol (IP) address, user settings, cookie identifiers, mobile carrier, mobile advertising and other unique identifiers, browser or device information, location information (including location derived from IP address), and Internet service provider. We may also automatically collect information regarding your use of our Services, such as pages that you visit before, during and after using our Services, information about the links you click, the types of content you interact with, the frequency and duration of your activities, and other information about how you use our Services.
• Cookie Policy (and Other Technologies). We, as well as third parties that provide content, advertising, or other functionality on our Services, may use cookies, pixel tags, and other technologies (“Technologies”) to automatically collect information through your use of our Services.
  • Cookies. Cookies are small text files placed in device browsers that store preferences and facilitate and enhance your experience.
  • Pixel Tags/Web Beacons. A pixel tag (also known as a web beacon) is a piece of code embedded in our Services that collects information about engagement on our Services. The use of a pixel tag allows us to record, for example, that a user has visited a particular web page or clicked on a particular advertisement. We may also include web beacons in e-mails to understand whether messages have been opened, acted on, or forwarded.

Our uses of these Technologies fall into the following general categories:

• Operationally Necessary. This includes Technologies that allow you access to our Services, applications, and tools that are required to identify irregular website behavior, prevent fraudulent activity, improve security, or allow you to make use of our functionality;
• Performance-Related. We may use Technologies to assess the performance of our Services, including as part of our analytic practices to help us understand how individuals use our Services (see Analytics below);
• Functionality-Related. We may use Technologies that allow us to offer you enhanced functionality when accessing or using our Services. This may include identifying you when you sign into our services or keeping track of your specified preferences, interests, or past items viewed;
• Advertising- or Targeting-Related. We may use first party or third-party Technologies, including cross-device tracking, to deliver content, including ads relevant to your interests, on our Services or on third-party digital properties.
• Analytics. We may use Technologies and other third-party tools to process analytics information on our Services. These Technologies allow us to better understand how our digital services are used and to continually improve and personalize our Services. Some of our analytics partners include:
  • • Google Analytics. For more information about how Google uses your personal information (including for its own purposes, e.g., for profiling or linking it to other data), please visit Google Analytics’ Privacy Policy. To learn more about how to opt-out of Google Analytics’ use of your information, please click here.
• Social Media Platforms. Our Services may contain social media buttons, such as, Facebook, LinkedIn, and Twitter, which might include widgets such as the “share this” button or other interactive mini programs). These features may collect personal information such as your IP address and which page you are visiting on our Services and may set a cookie to enable the feature to function properly. Your interactions with these platforms are governed by the privacy policy of the company providing it.
• Biometric Information. If you consent to our collection of biometric information through our Informed Consent Form or if our collection of biometric information is otherwise permitted, you agree that we may collect your body weight and height, blood samples, and biopsies, to conduct our clinic trials. Your biometric information may be shared with other companies and service providers commissioned by us to conduct the clinic trial. Where required by law, we will delete your biometric information within 2 years after the last marketing application which may be more than 25 years from collection of your personal information.

C. Personal Information Collected from Other Sources

Third-Party Services and Sources. We may obtain personal information about you from other sources, including through third-party services and organizations.  For example, if you access our Services through a social networking site, we may collect personal information about you from that third-party application that you have made available via your privacy settings. In addition, if you are a healthcare professional or researcher, we may collect personal information such as hospital affiliation, license information, areas of interest, contact information such as address, email, and phone number, and other due diligence related information from various sources.

3. HOW WE USE YOUR PERSONAL INFORMATION

We use your personal information for a variety of business purposes, including to provide our Services, for administrative purposes, and to market our products and services, as described below.

A. Provide Our Services

We use your information to fulfil our contract with you and provide you with our Services, such as:

• Managing your information;
• Providing access to certain areas, functionalities, and features of our Services;
• Answering requests for support;
• Communicating with you about your activities on our Services or changes to our policies;
• Undertaking activities to verify or maintain the quality or safety of our Services;
• Processing applications if you apply for a job we post on our Services; and
• Allowing you to register for events.

B. Administrative Purposes

We use your information for various administrative purposes, such as:

• Pursuing our legitimate interests such as direct marketing, research and development (including marketing research), network and information security, and fraud prevention;
• Detecting security incidents, protecting against malicious, deceptive, fraudulent or illegal activity, and prosecuting those responsible for that activity;
• Measuring interest and engagement in our Services;
• Short-term, transient use, such as contextual customization of ads;
• Improving, upgrading, or enhancing our Services;
• Developing new products and services;
• Ensuring internal quality control and safety;
• Authenticating and verifying individual identities, including requests to exercise your rights under this Privacy Policy;
• Debugging to identify and repair errors with our Services;
• Auditing relating to interactions, transactions, and other compliance activities;
• Sharing personal information with third parties as needed to provide our Services;
• Enforcing our agreements and policies; and
• Carrying out activities that are required to comply with our legal obligations.

We may use your information for other legitimate business purposes as permitted by law.

C. Marketing and Advertising our Products and Services

We may use personal information to tailor and provide you with content and advertisements. We may provide you with these materials as permitted by applicable law.

Some of the ways we market to you may include email campaigns, text messages, custom audiences advertising, and “interest-based” or “personalized advertising.”

D. With Your Consent

We may use personal information for other purposes that are clearly disclosed to you at the time you provide personal information or with your consent.

E. Other Purposes

We also use your personal information for other purposes as requested by you or as permitted by applicable law including to create de-identified and/or aggregated information.

4. HOW WE DISCLOSE YOUR PERSONAL INFORMATION

We disclose your personal information to third parties for a variety of business purposes, including to provide our Services, to protect us or others, or in the event of a major business transaction such as a merger, sale, or asset transfer, as described below.

A. To Provide our Services

The categories of third parties with whom we may share your personal information are described below.

• Clinical Research Organizations. If you participate in clinical trials and research, the clinical trial sites may disclose any personal information you provide in conjunction with your participation to the Clinical Research Organization (“CRO”) that we have engaged to manage the research or conduct the clinical trial. We endeavor not to collect clinical trial participant personal information directly, and other than pharmacovigilance data, all personal information we receive from CROs about clinical trial participants is de-identified or pseudonymized unless an exception applies.
• Clinical Trial Sites. If you request to be matched with a clinical trial site through our Services, we may share your personal information with the clinical trial site so that the clinical trial site can contact you about participating in the trial.
• Service Providers. We may share your personal information with our third-party service providers and vendors that assist us with the provision of our Services. This includes service providers and vendors that provide us with IT support, hosting, payment processing, customer service, and related services.
• Business Partners. We may share your personal information with business partners to provide you with a product or service you have requested. We may also share your personal information with business partners with whom we jointly offer products or services.
• Affiliates. We may share your personal information with our company affiliates for example: for our administrative purposes, IT management, or for them to provide services to you or support and supplement the services we provide.
• Other Users or Third Parties You Share or Interact With. As described above in “Personal Information We Collect,” our Services may allow you to share personal information or interact with other users and third parties (including individuals and third parties who do not use our Services and the general public).

The privacy choices you may have about your personal information are determined by applicable law and are described in “Your Privacy Choices and Rights” below.

B. To Protect Us or Others

We may access, preserve, and disclose any information we store associated with you to external parties if we, in good faith, believe doing so is required or appropriate to: comply with law enforcement or national security requests and legal process, such as a court order or subpoena; protect your, our, or others’ rights, property, or safety; enforce our policies or contracts; collect amounts owed to us; or assist with an investigation or prosecution of suspected or actual illegal activity.

C. Disclosure in the Event of Merger, Sale, or Other Asset Transfers

If we are involved in an actual or proposed merger, acquisition, financing due diligence, reorganization, bankruptcy, receivership, purchase or sale of assets, or transition of service to another provider, your information may be disclosed, sold or transferred as part of such a transaction, as permitted by law and/or contract.

5. YOUR PRIVACY CHOICES AND RIGHTS

Your Privacy Choices. The privacy choices you may have about your personal information are determined by applicable law and are described below.

• Email Communications. If you receive an unwanted email from us, you can use the unsubscribe link found at the bottom of the email to opt out of receiving future emails. Note you may not be able to opt out of non-promotional communications (e.g., communications regarding our Services or updates to our legal terms or this Privacy Policy).
• Cookies and Other Tracking Technologies. You can control our use of certain cookies and Technologies in the following ways:

• • Cookie Banner. You may decline all, or select the types of non-necessary Technologies that apply to your use of our Services by managing your preferences at any time by using the Cookie Preferences button on the applicable Zevra site.
  •  Browser Controls. You may stop or restrict the placement of certain Tracking Technologies in your browser or remove them by adjusting your preferences as your browser permits. These tools are generally available in the help section of browsers. You can also use the quick links, based on the browser type that you are using: Internet Explorer, Google Chrome, Firefox, and Safari. However, if you adjust your preferences, our Services may not work properly.
  • “Do Not Track” / “Global Privacy Control.” Do Not Track (“DNT”) is a privacy preference that users can set in certain web browsers. Additionally, some browsers or plug-ins use a “Global Privacy Control” (“GPC”), which you can learn more about at https://globalprivacycontrol.org/. Please note that we do not respond to or honor DNT signals or similar mechanisms transmitted by web browsers. However, if our site detects a GPC signal from your device, we will interpret it as either a Do Not Sell request or a request to limit the sale or sharing of personal information for targeted advertising depending on the law applicable to your jurisdiction.

Please note that to fully exercise your rights, you must separately opt out in each browser and on each device.

Your Privacy Rights. In accordance with applicable law, you may have the right to:

• Obtain Access to and Portability of Your Personal Information, including: (i) confirming whether we are processing your personal information; (ii) obtaining access to or a copy of your personal information; and (iii) receiving an electronic copy of personal information that you have provided to us, or asking us to send that information to another company in a structured, commonly used, and machine readable format (also known as the “right of data portability”);
• Request Correction of your personal information where it is inaccurate or incomplete. In some cases, we may provide self-service tools that enable you to update your personal information;
• Request Deletion of your personal information;
• Request Restriction of or Object to our processing of your personal information where the processing of your personal information is based on our legitimate interest or for direct marketing purposes, including (i) the right to opt-out of the sharing of personal information, (ii) object to or restrict our use of or your sensitive personal information, including the right to opt-out of the sharing of sensitive personal information, and (iii) opt out of the processing of your personal information for purposes of (a) targeted advertising, and (b) profiling in furtherance of decisions that produce legal or similarly significant effects concerning you; and
• Withdraw your Consent to our processing of your personal information. Please note that your withdrawal will only take effect for future processing and will not affect the lawfulness of processing before the withdrawal.

If you would like to exercise any of these rights, please contact us as set forth in “Contact Us” below or as otherwise instructed in the additional privacy notices provided at the time we collect your personal information. We will process such requests in accordance with applicable laws.

6. SECURITY OF YOUR INFORMATION

We take steps to ensure that your information is treated securely and in accordance with this Privacy Policy. Unfortunately, no system is 100% secure, and we cannot ensure or warrant the security of any information you provide to us. To the fullest extent permitted by applicable law, we do not accept liability for unauthorized access, use, disclosure, or loss of your personal information.

By accessing our Services or providing personal information to us, you agree that we may communicate with you electronically regarding security, privacy, and administrative issues relating to your use of our Services. If we learn of a security system’s breach, we may attempt to notify you electronically, for example by posting a notice on our Services, by mail, or by sending an email to you.

7. INTERNATIONAL DATA TRANSFERS

All information processed by us may be transferred, processed, and stored anywhere in the world, including, but not limited to, the United States or other countries, which may have data protection laws that are different from the laws where you live. We endeavor to safeguard your information consistent with the requirements of applicable laws.

If we transfer personal information which originates in the European Economic Area, Switzerland, and/or the United Kingdom to a country that has not been found to provide an adequate level of protection under applicable data protection laws, one of the safeguards we may use to support such transfer is the EU Standard Contractual Clauses.

Data Privacy Framework

Zevra complies with the EU-U.S. Data Privacy Framework (“EU-U.S. DPF”) and the UK Extension to the EU-U.S. DPF, and the Swiss-U.S. Data Privacy Framework (“Swiss-U.S. DPF”) as set forth by the U.S. Department of Commerce.  Zevra has certified to the U.S. Department of Commerce that it adheres to the EU-U.S. Data Privacy Framework Principles (EU-U.S. DPF Principles) with regard to the processing of personal information received from the European Union and the United Kingdom in reliance on the EU-U.S. DPF and the UK Extension to the EU-U.S. DPF.  Zevra has certified to the U.S. Department of Commerce that it adheres to the Swiss-U.S. Data Privacy Framework Principles (Swiss-U.S. DPF Principles) with regard to the processing of personal information received from Switzerland in reliance on the Swiss-U.S. DPF.  If there is any conflict between the terms in this Privacy Policy and the EU-U.S. DPF Principles and/or the Swiss-U.S. DPF Principles, the relevant set of Principles shall govern.  To learn more about the Data Privacy Framework program, and to view our certification, please visit https://www.dataprivacyframework.gov/.

If you are located in the European Economic Area, the United Kingdom, or Switzerland you may seek confirmation regarding whether Zevra is processing personal information about you, request access to Personal Information, and ask that we correct, amend or delete your personal information where it is inaccurate or has been processed in violation of the Data Privacy Framework Principles. Where otherwise permitted by applicable law, you may use any of the methods set out in this Privacy Policy to request access to, receive (port), object to processing (including in some cases automated decision making and/or profiling), restrict processing, seek rectification or request erasure of personal information held about you by Zevra.

Although Zevra makes good faith efforts to provide individuals with access to their Personal Information, there may be circumstances in which Zevra is unable to provide access, including but not limited to: where the information contains legal privilege, would compromise others’ privacy or other legitimate rights, where the burden or expense of providing access would be disproportionate to the risks to the Individual’s privacy in the case in question or where it is commercially proprietary. If Zevra determines that access should be restricted in any particular instance, we will provide you with an explanation of why that determination has been made and a contact point for any further inquiries. In situations where another method of making requests applies (such as in the context of research), we will provide you with information about how to make requests at the time you provide Personal Information to us. Such requests will be processed in line with local laws.

8. RETENTION OF PERSONAL INFORMATION

We store the personal information we collect as described in this Privacy Policy for as long as you use our Services, or as necessary to fulfill the purpose(s) for which it was collected, provide our services, resolve disputes, establish legal defenses, conduct audits, enforce our agreements, and comply with applicable laws, or based upon other criteria, including, but not limited to, the sensitivity and volume of such data.  Additionally, we endeavor to retain all such personal information in accordance with legal requirements.

9. CHILDREN’S INFORMATION

Our Services are not directed to children under the age of 18 (or other age as required by local law), and we do not knowingly collect personal information from children. If you are a parent or guardian believe your child has uploaded personal information to our site without your consent, please Contact Us below. If we become aware that a child has provided us with personal information in violation of applicable law, we will delete any personal information we have collected, unless we have a legal obligation to keep it (such as to protect our rights).

10. OTHER PROVISIONS

Third-Party Websites/Applications. Our Services may contain links to other websites/applications and other websites/applications may reference or link to our Services. These third-party services are not controlled by us. We encourage our users to read the privacy policies of each website and application with which they interact. We do not endorse, screen, or approve, and are not responsible for, the privacy practices or content of such other websites or applications. Providing personal information to third-party websites or applications is at your own risk.

Right to Lodge a Regulatory Complaint. Pursuant to certain data protection laws, you may have the right to lodge a complaint with the competent supervisory authority or attorney general if you believe our processing of your personal information violates applicable law.

11. CONTACT US

Zevra is the controller of the personal information processed under this Privacy Policy.

If you have any questions about our privacy practices or this Privacy Policy, or to exercise your rights as detailed in this Privacy Policy, please contact us at:

Zevra Therapeutics, Inc.
Attn: Corporate Secretary
1180 Celebration Boulevard, Suite 103
Celebration, FL 34747
1-888-958-1253
[email protected]

12. NOTICE AT COLLECTION AND SUPPLEMENTAL NOTICE FOR RESIDENTS OF CERTAIN U.S. STATES

This Notice at Collection and Supplemental Notice is for residents of states that have adopted comprehensive privacy legislation and that apply to our Services (collectively, “Applicable State Laws”).

We have collected the following categories of personal information from you in the last 12 months: personal identifiers (e.g., name, alias, postal address, unique personal identifier or other similar identifiers), protected classification characteristics under California or federal law, financial information (e.g., age, race, national origin), employment information, commercial information (e.g., records of personal property, or other purchasing or consuming histories or tendencies), geolocation information, Internet or other electronic network activity information, biometric information, and inferences about you.

Sensitive Personal Information.  We have also collected sensitive Personal Information from you, including details of health and disability, including medical information, health insurance information, and mental health. Processing of sensitive Personal Information is carried out exclusively for the purposes outlined above, to the extent permitted under law. This processing activity may include service providers.

As more fully described in the section titled, “Personal Information We Collect,” the sources from which we collect Personal Information include directly from you when you interact with us, automatically from you when you use our Services (for example, through cookies and other Technologies) from third parties (for example, from third-party referrals).

We use the Personal Information we collect about you for the business purposes described above in the section titled, “How We Use Your Personal Information.”

We disclose your Personal Information to the parties described above in the section titled, “How We Disclose Your Personal Information.”

Your Personal Information is not (i) “sold” or (ii) “shared” (for purposes of targeted advertising) by us, nor do we have actual knowledge of any such activity involving the Personal Information of minors under 16 years of age.

Data Retention.  The above section titled, “Retention of Personal Information,” outlines the criteria we utilize for determining how long to retain your Personal Information.

A. ADDITIONAL PRIVACY RIGHTS FOR RESIDENTS OF CERTAIN STATES

Non-Discrimination. Residents of certain states have the right not to receive discriminatory treatment by us for the exercise of their rights conferred by applicable law.

Authorized Agent. Only you, or someone legally authorized to act on your behalf, may make a verifiable consumer request related to your personal information. You may also make a verifiable consumer request on behalf of your minor child. To authorize an agent, provide written authorization signed by you and your designated agent and Contact Us as set forth above for additional instructions.

Verification. To protect your privacy, we will take steps to reasonably verify your identity before fulfilling your request. These steps may involve asking you to provide sufficient information that allows us to reasonably verify you are the person about whom we collected personal information or an authorized representative, or to answer questions regarding your account and use of our Services.

De-Identified Information. If we create or receive de-identified information, we will not attempt to reidentify such information, except to comply with applicable law.