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Website Privacy Statement

Last Updated: November, 2024

This Privacy Statement outlines the types of information PTC Therapeutics Inc. and its subsidiaries (collectively, “PTC Therapeutics,” “we,” “us,” or “our”) may collect; the means by which we may collect, use, or share your information; the steps we take to protect your information; and choices you have with respect to the use of your information. By using ptcbio.com (the “Site”), you agree to the terms of this Privacy Statement. Please read this entire Privacy Statement before using or submitting information to us. Whenever you submit information to us, you consent to the collection, storage, use, and disclosure (collectively, “Processing”) of that information in accordance with this Privacy Statement.

For purposes of this Privacy Statement, “Personally Identifiable Information” (“PII”) is any information by which you can be individually identified directly or in conjunction with other publicly-available information, including, but not limited to your name, address, email address, telephone number, and any financial information you may provide for purposes of completing a transaction with us. This Privacy Statement does not apply to any third party websites linked to this Site. PTC Therapeutics is not responsible for the privacy practices or the content of such third party sites.

This Privacy Statement applies to all PTC online or digital services activities, including, but not limited to www.ptcbio.com (the “Site“), our other websites, mobile applications (“Apps“) and digital services (“Services“) in which it is posted or linked. Please note that this Privacy Statement does not apply to information collected through third party websites or services that you may access through the Services.

PTC is a multi-national company which maintains datacenters around the world, including Europe and the United States (PTC Inc.’s global headquarters). PTC may process personal information in global databases that can be accessed by authorized PTC personnel worldwide.

Transfers of personal information between PTC and its group entities follow applicable laws and our Intra-Company Agreement for personal data processing.

This Privacy Statement is incorporated into and made a part of our Terms of Use. If you have not done so already, please also review PTC’s Terms of Use. The Terms of Use contain provisions that limit PTC’s liability to users of the Services.

Your California Privacy Rights: If you are a resident of California, please see the addendum below for additional information concerning your rights under the California Consumer Privacy Act.

IF YOU DO NOT AGREE WITH ANY PART OF THIS PRIVACY STATEMENT, THEN PLEASE DO NOT USE ANY OF THE SERVICES.

Table of Contents
COLLECTION OF PERSONAL DATA

We collect PII about you in order to deliver services you have requested, process a request for information, and/or to personalize your experience. Several places on this Site require PII if you choose to use them, including but not limited to, registration, surveys, and content sharing features. We collect this information about you only if you voluntarily provide it to us. Please be aware that certain features of this Site may not be available to you if you elect not to provide certain PII. Any PII you provide to us will be Processed in accordance with this Privacy Statement.

In addition, we may collect information from your computer or Internet device to conduct statistical analysis of the use of this Site.

We collect and use the following types of information that we obtain from you online while you are navigating through or using our Site.

Personal Information that you voluntarily provide to us

General Enquires: When you send us an email requesting general information, your email address and any other personal data contained or attached in your email will be collected and used in order to process and respond to your enquiry as well as stored for future compliance and auditing purposes. Such information may include, for example, your full name, email address and/or telephone number.

Medical Information Enquires: When you send us an email at medinfo@ptcbio.com requesting medical information, your email address and any other personal data contained or attached in your email will be collected and used in order to process and respond to your medical information enquiry as well as stored for future compliance and auditing purposes.

Pharmacovigilance: The safety monitoring of medicines is regulated. According to the local regulations we shall collect all the information necessary to deal with drug-related adverse events. Any personal data provided related to adverse events, or any other activity related to pharmacovigilance will be used for this purpose only.

Job Application: When you apply to a position at PTC via our dedicated Workday Career Site and/or via LinkedIn or other sites, we will collect and process any personal data provided by you such us your name, contact details, professional and business information, and any other related information typically provided in your CV. Such information may include your job title, education information, professional qualifications, work experience, professional networks, programs and activities in which you participated. If you wish to learn more on how PTC handles your personal information when submitting a job application, please visit our Recruitment Privacy Notice.

Usage Data (non-identifiable data): When you visit our Site, we automatically collect basic technical information through our automatic data collection tools, which may include cookies and other commonly used technologies. These tools collect certain standard information that your browser sends to the Site such as your browser type and language, access times, and address of the referring site. They may also collect information about your Internet Protocol (IP) address or click stream data within our Site (i.e. the pages you view, the links you click, and other actions taken in connection with the Site). The information we collect through cookies and other means does not individually identify you. This information helps us improve the functionality of the Site and optimizes your visit. More detailed information about our use of cookies by can be found on our Cookie Statement.

Social Media: The Site also uses social plugins (e.g., the Facebook share button) to enable you to easily share our content with friends and social or professional networks. When you share the videos, you will leave PTC’s Site, and your data will be processed by the social media operator. Videos hosted on YouTube and Vimeo can also be viewed directly on our Site. In this case, cookies and other similar means of tracking will be used by YouTube and Vimeo in accordance to their policies.

When you visit our Site, 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 Site. If you have previously logged into the associated social media Site (e.g., Facebook) before browsing on our Site, the social plugin allows that social media website to receive information about your visit to certain pages on our Site. The social plugin may collect this information for any visitors who have logged into social networks, whether they specifically interact with the plugin on our Sites (e.g., by clicking “Share”) or not. The social plugin may also allow the social media website to share information about your activities on our Sites with other users of their social media website.

Regarding the purpose and scope of data collection and further processing and use of the data by social networks as well as your rights in this respect and the setting options to protect your privacy, please consult the data privacy notices of the respective networks and/or web pages:

USE OF PERSONAL DATA

We will only process your personal information for purposes permitted by applicable laws, which may vary depending on where you live and where operate as well as on the actual processing activities. The purpose of the data processing activities may include:

(i) to contact you and respond to your enquiries regarding our products and services;
(ii) for business administration, including statistical analysis;
(iii) to personalize your visit to the Site, or assist you while you use the Site;
(iv) to provide you with product announcements or information regarding health topics or disease states and any other related scientific and educational updates related to our medicinal products and services;
(v) to improve the performance of the Site by helping us understand who uses the Site and how, and to better understand the needs and interests of Site visitors;
(vi) for collaboration and research purposes in order to make more informed and objective decisions when identifying and/or engaging with healthcare professionals and key opinion leaders; and
(vii) to comply with applicable laws, regulations, or codes of practice.

LEGAL BASIS FOR PROCESSING

We process personal information based on one or more of the following legal grounds where:

SHARING OF PERSONAL INFORMATION

We may disclose your personal data to certain third parties listed below, including third parties who provide us with various business services. We will not sell or otherwise disclose your personal data 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 and their subsidiary companies may also have access to personal data, provided to us by you including through or in connection with this Site for the purposes set out in this Privacy Statement.

Third Parties/Service Providers. We may also disclose your personal data to third party service providers who provide services to, such as but not limited to: Site hosting, professional services, including information technology services and related infrastructure, customer service, email delivery, auditing and other similar services as well as to business partners and collaborators. All Affiliates and any third party service providers are only permitted to use such data for the purposes of performing services for and on our behalf and in accordance with all applicable data protection laws.

Law Enforcement. In certain circumstances we may be called upon to share your personal data as required or permitted by law to comply with a subpoena or similar legal process or government request, or when we believe in good faith that disclosure is legally required or otherwise necessary to protect our rights and property, or the rights, property or safety of others, including to advisers, law enforcement, judicial and regulatory authorities. We may also transfer your personal data to a third party that acquires all or part of our assets or shares, or that succeeds us in carrying on all or part of our business, whether by merger, acquisition, reorganization or otherwise.

Regulatory Authorities. In cases where you wish to report any suspected adverse reactions, we may use the personal data you provide as necessary to submit complaint or adverse event reports to local and international health or pharmaceutical regulators, and as otherwise required by law.

In Connection with Business Transfers. If we sell or transfer a business unit (such as a subsidiary) or an asset (such as a website) to another company (including in connection with any bankruptcy or similar proceedings), we will disclose your personal data to such company and will require such company to use and protect your personal data consistent with this Privacy Policy. We may also disclose your personal data to companies that were formerly wholly or partly included in the PTC family of companies to whom we provide services during a transition period following separation.

In the Aggregate/De-identified. PTC may also disclose aggregate or de-identified data that is not personally identifiable to third parties for any purpose permitted under applicable law.

CHILDREN’S POLICY

The Services are not intended for use by children. If you are under the age of majority in your place of residence, you may use the Services only with the consent of or under the supervision of your parent or legal guardian. Consistent with the requirements of the Children’s Online Privacy Protection Act (COPPA), if we learn that a child under age 13 has provided Personal Information to Us without first receiving his or her parent’s verified consent, we will use that information only to respond directly to that child (or his or her parent or legal guardian) to inform the child that he or she cannot use the Services and subsequently we will dispose of such Personal Information in accordance with this Privacy Statement.

If you believe PTC may have any information from or about a child under age 13, please contact our Privacy and Data Protection Office using the contact information at the end of this Privacy Statement.

NOTICE, CHOICE, AND CONTROL

Before you provide PII to us, we will provide you with notice (including through this Privacy Statement) about the purposes for which we collect and use PII, how to contact us with any inquiries or complaints, the types of third parties to whom we disclose PII, and the choices and means by which you can limit the use and disclosure of your PII. We also will provide you with notice before using or disclosing your PII for a purpose other than for which it was originally collected.

If you opt-in for services or communications, you will be able to unsubscribe or opt-out at any time by following the instructions included in each communication or by contacting PTC Therapeutics at dataprivacy@ptcbio.com

PERSONAL DATA TRANSFERS

As a global company operating in numerous countries including Europe, USA, Japan, Latin America and Canada, personal information about you may be accessible to headquarters as well as to some affiliates outside your country of residence and selected vendors and partners, established in the US, EU or globally. Your personal information may be accessed by staff or suppliers in, transferred to and stored in a location outside your country of residence where data protection laws may not afford the same level of protection.

When processing personal information in countries that may not provide the same level of data protection as your country of residence, we will implement reasonable and appropriate legal, technical, and organizational security measures. These measures are designed to ensure the security of the processing and to protect your personal information from unauthorized access, use, or disclosure. This includes maintaining binding contractual arrangements with all third parties processing personal information on our behalf and, where necessary, executing adequate data transfer mechanisms, such as standard contractual clauses, for any cross-border data transfers from the EU to controllers or processors in third countries. These measures are adopted by the competent supervisory authorities to achieve an adequate level of data protection and to ensure the security of the processing of personal information.

We will (i) take any and all necessary steps to ensure that adequate safeguards are put in place to protect your information or (ii) ask for your explicit consent (unless we are permitted under applicable data protection law to make such transfers without additional formalities).

YOUR PRIVACY CHOICES AND UPDATES

You may update your personal data and your preferences. Different programs and services may offer alternative phone numbers, links or preference managers that allow you to inform us of your updates and choices, including opting out of communications. These contact options are typically available on our Sites or in the emails or texts we send, but you may always contact our Privacy and Data Protection Office, 500 Warren Corporate Center Drive, Warren, NJ 07059, or by email to dataprivacy@ptcbio.com. Please remember that limited communications may be necessary in order to complete your transaction or for you to participate in a particular program or service.

In the event you feel we do not handle your request in a timely manner, or if you are not satisfied with our response to any exercise of these rights, you are entitled, where applicable by local law, to lodge a complaint with the competent supervisory authority of your place of residence.

SECURITY

The security of your personal data is important to us. All information you provide to us is stored on secure servers and accessed and used subject to our security policies and standards. We take reasonable steps, consistent with generally accepted industry standards, including technical, administrative, and physical safeguards to protect the personal data submitted to us from loss, misuses and unauthorized access, disclosure, alteration, and destruction. However, no method of security or transmission over the Internet is entirely secure. You should always use caution when transmitting personal data over the Internet. Access to your personal information is limited to a restricted number of employees whose duties reasonably require such information and third parties with whom we have contracts to carry out business activities on their behalf. Our employees have been trained on the importance of privacy and how to handle and manage personal information appropriately and securely.

DATA RETENTION

In the context of each activity involving collection, processing, or storage of personal information, we will keep your personal information for no longer than the relevant period necessary for the specific processing purpose(s) for which your information was collected and any other permitted associated purpose. Such retention periods will be shared, as applicable, in the documentation relevant to the activity. Information may be retained for a longer duration where applicable laws or regulations require, or allow, to do so. Information that is no longer needed is either irreversibly anonymized (and the anonymized information may be retained for longer periods) or securely destroyed.

COOKIES

Cookies are small, sometimes encrypted text files that are stored on computer hard drives by websites you visit. Their purpose is to help users navigate websites efficiently as well as to provide information to the owner of the website in order to personalize and optimize your visit.

There are a variety of tools to control cookies and similar technologies, including browser controls to block and delete cookies. If you elect to block cookies, please note that you may not be able to take full advantage of the features and functions of the Site. Please refer to your browser’s documentation for information on these functions. You may also wish to refer to http://www.allaboutcookies.org/manage-cookies/index.html.

To find out more about cookies, including how to see what cookies have been set and how to manage and delete them, please read our Cookie Statement.

ADDENDUM – PRIVACY STATEMENT FOR CALIFORNIA RESIDENTS

This PRIVACY STATEMENT FOR CALIFORNIA RESIDENTS supplements the information contained in the Website Privacy Statement and applies solely to visitors, users, and others who reside in the State of California (“consumers” or “you”). We adopt this notice to comply with the California Consumer Privacy Act of 2018 (“CCPA”) and other California privacy laws. Any terms defined in the CCPA have the same meaning when used in this notice.

California Consumer Privacy Notice Act

Information We Collect: We may obtain information that identifies, relates to, describes, references, is capable of being associated with, or could reasonably be linked, directly or indirectly, with a particular consumer or device (“Personal Information”). In particular, we have collected the following categories of Personal Information from consumers within the last twelve (12) months:

CategoryExamples
A. IdentifiersA real name, alias, postal address, unique personal identifier, online identifier, Internet Protocol (IP) address, email address, account name, Social Security number, driver’s license number, passport number, or other similar identifiers.
B. Personal information categories listed in the California Customer Records statute (Cal. Civ. Code § 1798.80(e))A name, signature, Social Security number, physical characteristics or description, address, telephone number, passport number, insurance policy number, education, employment, employment history, bank account number, credit card number, debit card number, or any other financial information, medical information, or health insurance information. Some Personal Information included in this category may overlap with other categories.
C. Protected classification characteristics under California or federal lawAge, medical condition, sex (including gender, gender identity, gender expression, pregnancy or childbirth and related medical conditions), genetic information (including familial genetic information).
D. Commercial informationRecords of products or services purchased, obtained, or other purchasing or consuming histories or tendencies.
E. Biometric informationGenetic, physiological, and biological characteristics, or activity patterns used to extract a template or other identifier or identifying information, such as gait, or other physical patterns.
F. Internet or other similar network activityBrowsing history, search history, information on a consumer’s interaction with our website, application, or advertisement.
G. Professional or employment-related informationCurrent or past job history or performance evaluations.
H. Non-public education information (per the Family Education Rights and Privacy Act (20 U.S.C. Section 1232g, 34 C.F.R. Part 99))Education records directly related to a student maintained by an educational institution or party acting on its behalf, such as grades, transcripts, class lists, student schedules, student identification codes, student financial information, or student disciplinary records.
I. Inferences drawn from other Personal informationProfile reflecting a person’s preferences, characteristics, psychological trends, predispositions, behavior, attitudes, intelligence, abilities, and aptitudes.

Sources of Personal Information We Collect: We obtain the categories of Personal Information listed above from the following categories of sources:

Use of Personal Information: We collect the categories of Personal Information listed above for the following purposes:

We will not collect additional categories of Personal Information or use the Personal Information we collected for materially different, unrelated, or incompatible purposes without providing you notice.

Sharing Personal Information: We may disclose your Personal Information to a third-party for a business purpose. When we disclose Personal Information for a business purpose, we enter a contract that describes the purpose and requires the recipient to both keep that Personal Information confidential and not use it for any purpose except performing the contract.

We disclose your Personal Information for a business purpose to the following categories of third-parties:

In the preceding twelve (12) months, we have not sold any Personal Information.

For purposes of this CCPA Notice, “sold” or “sale” means the disclosure of Personal Information for monetary or other valuable consideration but does not include, for example, the transfer of Personal Information as an asset that is part of a merger, bankruptcy, or other disposition of all or any portion of our business.

Your Privacy Rights: You have the following rights regarding our collection and use of your Personal Information. To exercise those rights, you must submit a request via email to dataprivacy@ptcbio.com. We may ask you to provide additional information to verify your request. We will not discriminate against you if you exercise your rights as described in this notice.

(i) Right to Information
You have the right to request the following information regarding the Personal Information we have collected about you:

You have the right to request the following information regarding the Personal Information we have disclosed about you:

(ii) Right to Opt Out of Sale of Personal Information

Under the CCPA, California residents have the right to direct a business that sells their Personal Information to cease such sales. As noted, we have not sold any Personal Information in the preceding 12 months and we will not sell your Personal Information.

(iii) Right to Request Deletion

You have the right to request that we delete the Personal Information we have about you. However, we are not required to delete information if it is necessary to retain your information to:

CONTACT US

If you have any questions, comments or suggestions about this Privacy Statement or our privacy practices, please contact us at: dataprivacy@ptcbio.com.

UPDATES TO OUR PRIVACY POLICY

From time to time, we may update this Privacy Policy. Any changes will be effective when we post the revised Privacy Policy. This Privacy Policy was last updated as of the effective date listed above. Minor changes to the policy may occur that will not significantly affect our use of personal data without notice or consent. We encourage you to periodically review this page for the latest information on our privacy practices.