ORPHAZYME US PRIVACY STATEMENT

 
The protection of personal information is of utmost importance to Orphazyme US, Inc. We are committed to protecting your privacy and being transparent about the ways in which we collect and process your information.

This US Privacy Statement (“Privacy Statement”) describes our practices for handling the information we collect about you through our operations and services that include an authorized link or reference to this Privacy Statement (“Services”).

This Privacy Statement applies to United States audiences only.

California Residents: For information relating to California residents, please refer to the Rights of California Residents provision below.

Nevada: For information relating to Nevada residents, please refer to the Rights of Nevada Residents provision below.

 

INFORMATION COLLECTED BY ORPHAZYME

Depending on your relationship to Orphazyme, we may collect the following categories of information:

• Identifiers, such as your name, contact information, and online identifiers.
• If you communicate with or request information from Orphazyme, you may be prompted to provide your contact information as well as other personal information or health information that is relevant to your request.
• Demographic information, such as gender and marital status.
• Health and medical information may be collected in connection with managing clinical trials, research, providing patient support programs, distributing and marketing our products, managing product access and compassionate use programs and tracking adverse event reports, such as information about physical and mental health conditions and diagnoses, treatments or care for medical conditions, genetic information, family medical history and medications, and medical insurance information.
• Information you provide in connection with applying for, or participating in, patient assistance or support programs, such as financial need information.
• Information regarding parents or legal guardians.
• Remuneration information when you provide a service to Orphazyme in your capacity as a healthcare professional.
• Professional, clinical practice and educational background when you provide services for Orphazyme or participate in an Orphazyme sponsored program, research or survey in your capacity as a healthcare professional.
• Employment, education and other background information when you inquire about employment with Orphazyme.
• Internet and electronic network activity information, such as your IP address and information about your interaction with our online Services.
• Geolocation information.
• Audio, electronic, and visual information, such as identifiable photographs and video.
• Correspondence you send to us.

 

HOW INFORMATION IS COLLECTED

• We collect information directly from you when you provide the information, whether electronically, by calling us, through other means, or when you authorize others to provide it to us.
• We collect information about you through tracking tools and when we observe other information about you. See the “Cookies and Similar Technologies” section for more information.
• Third parties may also share information about you with us. For example, our research partners, service providers and other business partners may give us information. We may receive information from commercial sources such as companies that maintain information about healthcare providers and their specialties.
• From time to time, we may use or augment the personal information we have about you with information obtained from other sources, such as public databases, social media platforms and other third parties. For example, we may use such third-party information to confirm contact or financial information, to verify licensure of healthcare professionals or to better understand your interests by associating demographic information with the information you have provided.
• We may aggregate or de-identify the information described above. Aggregated or de-identified data is not subject to this Privacy Statement.

When you are asked to provide personal information, you may decline. If you choose not to provide data that is necessary to for us to provide requested services, however, we may not be able to provide to you those services.

If you submit to us any personal information relating to another individual, you represent that you have the authority to do so and to permit us to use the information in accordance with this Privacy Statement.

 

HOW ORPHAZYME USES INFORMATION

We use and otherwise process each of the categories of information identified above for the following business purposes:

• To provide customer service, health and product support, and patient engagement services.
• To communicate with you and to provide you with the information, products and services that you request from us. This includes contacting you regarding such products and services, such as to communicate information on the proper use of our products, and to provide, collect, review, and communicate information on the quality, safety, or effectiveness of our products.
• To operate our business. We also may use your information to administer our Services, including vendor management, troubleshooting, data analytics, testing, research, and statistical and survey activities.
• For research and development of our products, including scientific, business, and market research.
• To make suggestions and recommendations to you about products or services that are similar to those you have enquired about or may otherwise be of interest to you, or to send you promotional materials and other information about our products, health topics and disease states from us or by our affiliates and trusted business partners.
• To improve our Services, and to ensure that content is presented in the most relevant and effective manner.
• To keep our Services, business and users safe and secure, and to protect the rights and services of others.
• To comply with applicable legal and regulatory obligations, and to protect or exercise our legal rights or defend against legal claims. This includes using your information to comply with regulatory requirements relating to the safety and efficacy of our products.

 

HOW ORPHAZYME SHARES YOUR INFORMATION

We may share the personal information we collect with certain third parties.

• We may use your information in submitting reports or other materials to the U.S. Food and Drug Administration.
• We may use information you provide regarding your experience with any of our products to contact your healthcare professional regarding an unexpected event involving the use of any of our products.
• We may share your information in connection with research and development, and in ensuring and promoting the safety and efficacy of our products.
• We share your information with various service providers, contractors, agents, or partners in connection with business services they are providing with or on behalf of Orphazyme US. Examples of such third parties include individuals and companies that develop, host or maintain our websites, or online resources, or those that provide customer service support activities.
• We may share your information with third parties with whom Orphazyme US is jointly marketing a product or service or jointly conducting a program or activity.
• We may share your information with Orphazyme affiliates.
• We may share personal information in connection with a transaction involving all or part of our assets. For example, the information we have about you may be transferred to a third party as part of a sale or merger transaction.
• We may disclose information to respond to legal requirements, law enforcement requests, legal claims or government inquiries, such as a search warrant, subpoena, or court order.
• We may disclose information to protect and defend our rights or property, and to address security situations or emergencies when safety is at risk.
• We may share information for any other purposes disclosed to you at the time we collect the information or pursuant to your consent.

 

COOKIES AND SIMILAR TECHNOLOGIES

Cookies are used by Orphazyme. Orphazyme’s Cookie Policy can be accessed at www.orphazyme.com/us/cookie-policy.

 

YOUR RIGHTS AND CHOICES

You may contact us at any time if you have questions about this Privacy Statement or the personal information we collect about you. Depending on where you live, you may have certain rights under applicable laws, including:

• The right to access your personal information; and
• The right request the deletion of certain personal information.

If you would like to access or delete your information, or otherwise exercise your rights, please contact us as described below under the “Contact Information” section. After you make your request, we will use the information we have to verify your identity (and if applicable your authorized agent’s identity), and to match the personal information we have collected about you, if any, to your verified identity. Our verification process may include a request for additional information, if needed, to confirm your identity or your authorized agent’s identity, or obtain proof that gave your authorized agent permission to act on your behalf. Once your identity is verified, we will respond to your request within the time and manner required by applicable laws. Please note that we may need to retain certain personal information for recordkeeping purposes and/or to complete any transactions that you began prior to requesting a change or deletion.

 

ORPHAZYME’S RETENTION OF INFORMATION

We will retain your personal information for as long as needed or permitted in light of the purpose(s) for which it was obtained and as outlined in this Privacy Statement.

 

TRANSFER OF INFORMATION ACROSS INTERNATIONAL BOUNDARIES

This Service is owned and operated by Orphazyme US, Inc. but the information you provide may be accessible by, collected by or transferred to our affiliates, vendors, suppliers and other business partners in other countries. Furthermore, this Privacy Statement addresses only information that is or may be collected on our US Services (which are not intended to be used by non-US residents) or information otherwise collected in the United States. If you are using this Service from a country other than the United States, your communication with us will necessarily result in the transfer of information across international boundaries. By using this Service, you consent to the collection, storage, and processing of your information in the United States and in any country to which we may transfer your information in the course of our business operations.

 

CHILDREN’S PRIVACY

We do not knowingly collect or sell any information from children, as defined by applicable law, without parental consent or as otherwise permitted by applicable law. If your child has submitted personal information and you would like to request that such personal information be removed, please contact us as described below under the “Contact Information” section.

 

DATA SECURITY

We use technical, administrative and procedural measures in an attempt to safeguard your personal information from unauthorized access or use. You should keep in mind, however, that no such measure is ever 100% effective though and we cannot guarantee that your personal information will be secure from theft, loss, or unauthorized access or use. You should therefore take special care in deciding what information you send to us via email. Where you use user IDs and passwords to access the Services, it is your responsibility to safeguard your access credentials. Please note that information collected by third parties may not have the same security protections as information you submit to us, and we are not responsible for protecting the security of such information. If you have reason to believe that your interaction with us is no longer secure or that the security of any account you might have with us has been compromised, please immediately notify us by contacting us as described below under the “Contact Information” section.

 

LINKS TO OTHER WEBSITES

Our website contains links that lead to other websites. This Privacy Statement does not apply to third-party websites, even if they are accessed through a link from an Orphazyme US website or online resource or otherwise directed to by one of our Services. We encourage you to review the privacy policies of any third-party website before providing any personal information. When you click on these links, Orphazyme is not responsible for your data and privacy protection.

 

CONTACT INFORMATION

Questions about this Privacy Statement may be directed to: US-Privacy@orphazyme.com or you can write to us at:

Orphazyme US, Inc.
180 North Lasalle Street, Suite 3475
Chicago, IL 60601 USA
Attn: Privacy Office
+1-773-770-6888

 

CHANGES

We reserve the right to amend this Privacy Statement at our discretion. When changes are made to this Privacy Statement, we will post the updated policy and the date the last revisions were made. We encourage you to periodically review this page for the most current Privacy Statement.

 

RIGHTS OF CALIFORNIA RESIDENTS

As a California resident, you have the right to request:

• • Information about the personal information that Orphazyme has collected, used and disclosed about you over the previous 12 months, including: the categories of personal information collected; the categories of sources from which your personal information was collected; the business or commercial purposes for which Orphazyme collected your personal information; the categories of your personal information that was disclosed for a business or commercial purpose; and the categories of third parties with whom Orphazyme shared your personal information;
  • The specific personal information that Orphazyme has collected about you over the previous 12 months; and
  • To have your personal information deleted.

We will not discriminate against you for exercising your rights and choices. We share your information as described in this Privacy Statement, but we do not, and will not without consent, sell your information to third parties for money or other similar types of consideration.

Please see the Your Rights and Choices section if you or your authorized representative have questions or would like to make a request to exercise any of your rights described in this section.

 

RIGHTS OF NEVADA RESIDENTS

As a Nevada resident, you have the right to opt out of the sale of certain personal information to third parties. However, while we share your information as described in this Privacy Statement, we do not, and will not without consent, sell your information to third parties for money or other similar types of consideration.

Please see the Your Rights and Choices section if you or your authorized representative have questions or would like to make a request to exercise your right described in this section.