Thank you for registering for the PTC Therapeutics programme, which will consist of product-related information being discussed (the “Programme”). This Programme is organized and funded by PTC Therapeutics, Inc. located at 100 Corporate Court, South Plainfield, NJ 07080, United States, Phone: +1 908 222 7000, (together with its affiliates, “we”, “us”, “PTC”). PTC is responsible, as the data controller, for the collection and use of your personal data as collected and/or provided by you via the ON24 webinar platform. We are committed to respecting and protecting your privacy.

This Privacy Statement applies to information collection in respect to your participation to the Programme. Please read this Privacy Statement carefully in order to understand our views and practices regarding your personal data and how we will treat it.

By registering to the Programme, you explicitly consent to the use of your personal data by us as explained in this Privacy Statement. If you do not agree with the use of personal data after the Programme and as set out in this Privacy Statement, please contact us: Receipt of this Privacy Statement constitutes acceptance of it, unless PTC is informed by you.

Personal Data Collected:

To participate in this virtual Programme, you need to complete the online registration form and share with us some contact details for the purpose of identification and administration of your participation in the Programme. We collect and use the following information, that we obtain from you in respect to your participation to the Programme:

  • Personal Information that you voluntarily provide to us via the following ways:

Registration Form: When you are registering to this Programme, your name and contact information will be collected and used in order to process and manage your registration, as well as to confirm your participation to the Programme and respond to any requests from you. Such information may include your name, working address (centre/hospital name), business email address, specialty and country of residence. Upon your consent, we may also use your personal information to send you educational and promotional material and newsletters (subject to any applicable laws and regulations for healthcare professionals in your country) about our websites, meetings, events and activities, including information about other areas of interest and services not specifically relating to genetic disorders. Providing your personal data is voluntary; you have the right to withdraw your consent at any time, without giving any reasons. For more information on how to exercise your privacy rights please see the respective section below “Your Privacy Rights”.

Quality and Safety (Adverse Event) Reporting: This Programme will include some product-related information being discussed.

If you wish to submit a quality complaint or an adverse event report for one of our products, you may send an email to, and we will collect and process your personal information (name, contact details, job title), with the scope to handle your complaint and/or adverse event report and to follow up with you regarding an unexpected event involving use of our product. We will also further store and process such reports in order to comply with applicable quality and safety reporting laws and regulations.

How We Use Personal Data:

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

  • To contact you and respond to any inquiries related to your participation in the Programme;
  • To perform the HCP verification process and confirm which verified HCPs can participate in the Programme, if applicable;
  • For business administration, including statistical analysis;
  • To assist you while you participate in the Programme;
  • To provide you with information regarding health topics or disease states;
  • 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 managing the collaboration relationship with healthcare professionals; and
  • To comply with applicable laws, regulations or codes of practice.

Legal Basis of Processing:

PTC processes personal information based on one or more of the following legal grounds:

  • Where you have provided your consent. Please note that when requested, you are not obliged to provide your consent; your consent is provided on a purely voluntary basis. If you choose to refuse to provide it, this will only mean that we will not be able to process information in order to manage your participation to the Programme and send you communications about the Programme and related content;
  • Where it is necessary to comply with contractual obligations owed towards you;
  • Where the processing is necessary for compliance with a legal obligation to which we are subject;
  • Where the processing is necessary to protect the vital interests of an individual;
  • Where the processing is necessary in the public interest or for a public task; or
  • Where the processing is in PTC’s overriding legitimate interest; for example, PTC processes information for scientific and statistical research purposes, information about PTC visitors and supplier personnel, for scientific development, for the improvement of our products and services, to provide security measures to protect PTC’s employees, contractors, patients, information and other assets and to prevent crime (such as fraud, financial crime and theft of intellectual and industry property and to ensure the integrity of our manufacturing and other operations).

Sharing Information:

We may disclose your personal information 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 Information 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.

PTC Affiliates

PTC and its subsidiary companies may also have access to personal data, provided to us by you including through or in connection with this Programme for the purposes set out in this Privacy Statement.

Third Parties/Service Providers

We may also disclose your personal information to third-party service providers who provide services to PTC.

We utilize the data processors noted below, who act on our behalf, and provide the required processes in respect of the Programme:

Mercury House,
117 Waterloo Road,
United Kingdom
Privacy Policy:

Holden House,
57 Rathbone Place,
United Kingdom
Privacy Policy:

Method and emotive are UK based companies, supporting the co-ordination and execution of this Programme, by developing the associated traffic driving activities, content creation and administration of the programme.

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 information 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.

Data Transfers:

As a global company, PTC operates in numerous countries including Europe, USA, Japan, Latin America and Canada. Personal information about you will be accessible to PTC’s headquarters in the United States and to PTC affiliates and selected vendors and partners globally. In case PTC processes personal information in countries that may not provide the same level of data protection as your residency country, PTC will implement reasonable and appropriate legal as well as technical and organizational security measures to ensure the security of the processing and in particular to protect your personal information from unauthorized access, use or disclosure including, but not limited to, maintaining binding contractual arrangements with all third parties processing personal information of individuals, for and on behalf of PTC, as well as executing, where necessary, adequate data transfer mechanisms, with the aim to achieve an adequate level of data protection of your personal information and to ensure the security of the processing.

For residents of EEA and the UK – whenever we transfer personal information outside of the European Economic Area, we will either ask for explicit consent or take any and all necessary steps to ensure that adequate safeguards are put in place to protect personal information (unless we are permitted under applicable laws to make such transfers without additional formalities e.g. where the recipient country is considered an adequate destination). Such safeguards include the use of European Commission approved standard contractual clauses.

Your Privacy Rights:

For residents of the EEA and the UK – you have the right to request from us to:

  1. Provide you with further details on the processing of your personal information;
  2. Provide you access to your personal data that we hold about you and copies thereof;
  3. Update any inaccuracies in the personal information we hold that is demonstrated to be inaccurate or incomplete;
  4. Delete any personal information that we no longer have a lawful basis to use;
  5. Provide you or a third party, with a copy of your data in a digital format (data portability);
  6. Stop a particular processing when you withdraw your consent;
  7. Object to any processing based on the legitimate interests or public interest to process information, unless our reasons for undertaking that processing outweigh any prejudice to your data protection rights; and
  8. Restrict certain aspects of the processing of your information

In case 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 to lodge a complaint with the competent supervisory authority of your place of residence. Further information and contact details of the European competent supervisory authorities can be found here: edpb/board/members_en.

UK residents can contact the Information Commissioner’s Office (ICO) here: The Information Commissioner’s Office | Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF | Website: | Tel. +44 1625 545 700 | Helpline number: 0303 123 1113

If you wish to exercise one of the above-mentioned rights, please send us your request in writing to the following address: PTC Therapeutics International Limited, located at 5th Floor, 3 Grand Canal Plaza, Grand Canal Street Upper, Dublin 4, Ireland or send us your request via email to


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 PTC employees whose duties reasonably require such information and third parties with whom PTC contracts to carry out business activities on its behalf. Our employees have been trained on the importance of privacy and how to handle and manage personal information appropriately and securely.

Data Retention:

We will retain your personal information for no longer than is necessary for the processing purpose(s) for which your information was collected and any other permitted associated purpose. Information may be retained for a longer duration where applicable laws or regulations require or allow PTC 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.

Contact Us:

If you have any questions, comments or suggestions about this Privacy Statement or our privacy practices, please contact us: