Skip to main content
United States of America

Privacy Statement

Last updated: December 2025

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, e-mail 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 web sites 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 and emailed to pharmacovigilance@ptcbio.com , or any other activity related to pharmacovigilance will be used only for this purpose.

Job Application: When you apply to a position at PTC’s 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, educational information, professional qualifications, work experience, professional networks, or programs and activities in which you participated. If you wish to learn more on how  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 the address of the site from which you came to the 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 make your activities more convenient and efficient. More detailed information about use of cookies can be found at our Cookies 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 the site, and your data will be processed by the social media operator. Videos hosted on YouTube can also be viewed directly on our website. In this case, cookies and other similar means of tracking will be used by YouTube.
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. You will also find the respective links below.

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 you 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 including on 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 with regard 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 visitors and users;
(vi) for collaboration and research purposes in order to make more informed and objective decisions when identifying, engaging with healthcare professionals and key opinion leaders; and
(vii) to comply with applicable laws, regulations, or codes of practice.

BASIS FOR PROCESSING

We processes 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 its 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, e-mail 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 a 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. If we learn that a child under age has provided Personal Information to or through the Services 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, 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, we operate 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 the 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 at, a location outside your country of residence in which data protection laws may not afford the same level of data protection.

When PTC processes your personal information in countries that may not offer the same level of data protection as your home country, we take specific, robust steps to ensure the security and privacy of that data. By implementing reasonable and appropriate legal, technical, and organizational security measures to protect your information from unauthorized access, use, or disclosure. We enter into binding contractual arrangements with all third parties who process personal information on our behalf. For cross-border data transfers from locations like the EU to third countries, we execute adequate data transfer mechanisms, such as standard contractual clauses approved by competent authorities. These measures aim to achieve an adequate level of data protection and ensure the security of your personal information, regardless of where it is processed.

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 RIGHTS, CHOICES AND UPDATES

You may update your personal data, preferences or exercise other rights granted to you in your local law. Different programs and services may offer different 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 for assistance our Privacy and Data Protection Office 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 we do not handle your request timely 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 such business activities. 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 period will be shared, as applicable, in the documentation relevant to such activity. Information may be retained for a longer duration where applicable laws or regulations require or allow to do so. Your 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 that you visit. They are used to help users navigate on websites efficiently as well as to provide information to the owner of the website. When you visit the Site, we may place a “cookie” in order to improve your experience by recognizing you when you visit the Site, such as by assigning a session ID and to deliver content specific to your interests.

You have 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 look at your browser for instructions 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 Cookies Statement.

Addendum — US CONSUMER HEALTH DATA STATEMENT

Pursuant to the Washington My Health My Data Act and the Nevada Consumer Health Data Privacy Law (together, the “Health Privacy Laws”), we are providing the following details regarding the categories of Consumer Health Data that we may collect, use, and share about Washington and Nevada consumers. This is intended for Washington and Nevada Residents (the “Policy”) supplements our Privacy Statement.

For purposes of this Policy, “Consumer Health Data” means personal information that is linked or reasonably linkable to a consumer and that identifies the consumer’s past, present, or future physical or mental health status.

Collection of Consumer Health Data

The Consumer Health Data we may collect from you includes:

How We Use Consumer Health Data

Our Commitment to Not Inferring Characteristics

We collect or process Consumer Health Data only for the stated purposes above. We do not collect or process Consumer Health Data for the purpose of inferring characteristics about you beyond these operational uses.

Sources of Collection of Consumer Health Data:

We do not “sell” Consumer Health Data, as defined in the Health Privacy Laws.

We might share your Consumer Health Data with:


Individual rights

If you are a Washington or Nevada consumer, you may make certain requests regarding your Consumer Health Data, subject to applicable law and certain exceptions. These requests may include: to know whether we are collecting or sharing your Consumer Health Data; to know the third parties to whom we have shared your Consumer Health Data and their contact information; to opt out of the collection or sharing of your Consumer Health Data; to delete, access, amend, or review your Consumer Health Data.

To make a request under this Policy, or to appeal a refusal to take action on your request, please email dataprivacy@ptcbio.com  We will verify and respond to your request consistent with applicable law. We may need to request additional information from you in order to verify your identity and protect against fraudulent requests. If you make a deletion request, we may ask you to confirm your request before we delete your Consumer Health Data.

Changes to this policy

We may change or update this Consumer Health Data Privacy Policy from time to time. When we do, we will post the revised version on this page with a new “Last Updated” date.

Addendum – PRIVACY STATEMENT FOR CALIFORNIA RESIDENTS

This PRIVACY STATEMENT FOR CALIFORNIA RESIDENTS supplements the information contained in the Web Site Privacy Statementand 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:

Personal Information

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.

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:

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.

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 STATEMENT

From time to time, we may update this Privacy Statement. Any changes will be effective when we post the revised Privacy Statement. This Privacy Statement was last updated as of the effective date listed above. Minor changes to the statement 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.