Thank you for visiting the Duchenne and You Web Site (the “Site”) which is operated by PTC Therapeutics International Limited, located at Unit 1, 52-55 Sir John Rogerson’s Quay, Dublin 2, D02 NA07, Ireland, Phone: +353 1 906 8700, www.ptcbio.ie (“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 forms on this website. We are committed to respecting and protecting your privacy.

Duchenne and You is a disease awareness website dedicated to those who have had their lives touched by Duchenne muscular dystrophy. Its content is intended for residents of the EU only. This Site is not intended for residents of the UK and Ireland. It is available to the general public for informational purposes only and should not be used for diagnosis or treatment of a health problem or disease. It is not intended as a substitute for consultation with a healthcare provider. If you are a Healthcare Provider, please refer to our dedicated website http://takeonduchenne.eu for more specific information on how to diagnose and manage Duchenne muscular dystrophy.

This Privacy Statement applies to information collection and use while you are visiting and using the Site. Please read this Privacy Statement carefully in order to understand our views and practices regarding your personal data and how we will treat it. The Privacy Statement also forms part of our Terms and Conditions (the “Terms”) for the Site.

By using the Site 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 as set out in this Privacy Statement, or the Terms, please do not use this Site any further. Use of the Site constitutes acceptance of this Privacy Statement and our Terms.

Because of our commitment to the protection of your personal data, we evaluate our privacy policies and procedures to implement improvements and refinements from time to time. We encourage you to check the Site frequently to see the current Privacy Statement and Terms in effect and any changes that may have been made to them. If we make material changes to this Privacy Statement we will notify you by means of a prominent notice on this Site prior to the change becoming effective.

Personal Data Collected:

You do not have to register for a service or program to receive much of the information available through our Site. We collect and use two types of information, that we obtain from you online while you are navigating through or using the online services of our Site.

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

Emails: When you send us an email at  info@duchenneandyou.eu 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 inquiry as well as stored for future compliance and auditing purposes. Such information may include for example your name, email address and/or telephone number.

Quality and Safety (Adverse Event) Reporting: This Site does not promote PTC’s products. It offers only informational material on the diagnose and management of Duchenne Muscular Dystrophy disease. If you wish submit a quality complaint or an adverse event report for one of our products, you may send an email to pharmacovigilance@ptcbio.com, 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.

Resources / Material Request: To promote the scientific knowledge we provide you the possibility to download free of charge the Duchenne Guide for families and informational booklets, developed and funded by PTC. When you download such informational materials from our Site, we do not collect or process any personal data of you. You may also view tutorial videos with recommended stretches by physiotherapists. Such videos are uploaded on YouTube and thus you will be directed to its official page. For further information on how YouTube collects and processes your personal data please refer to its respective privacy documentation and terms of use available on YouTube official website.

You may also view tutorial videos with recommended stretches by physiotherapists. Such videos are uploaded on YouTube and thus you will be directed to its official page. For further information on how YouTube collects and processes your personal data please refer to its respective privacy documentation and terms of use available on YouTube official website.

Reach out to the Duchenne Community: If you are interested in connecting to the Duchenne Community we suggest a non-exhaustive list of patient organizations and groups that you can go to for more information and support relevant to your local country. By clicking to any of these suggested organizations you will be directed to their official website. PTC does not collect any personal data from and does not review, control or endorse the content of external websites. Your linking to any other websites is at your own risk, and you are responsible for learning about and complying with the terms of usage and other conditions posted on those websites.

Feedback: When you voluntarily provide us your feedback regarding the scientific information on our Site, no personal information will be collected, linked or shared with other parties, websites or social media platforms.

Meetings and Events: To encourage you to gain a better knowledge on neuromuscular disorders and to network with global experts in the field of rare diseases we have included a dedicated page with upcoming international meetings and events. This content is purely for informational purposes. If you are interested in attending an event and learn more about the event’s agenda, you will be directed to the website of the event, by clicking on the hyperlink of such event. Please note that PTC does not collect any personal data and does not review, control or endorse the content of any of these external websites. Accessing any of these websites is possible only at your own risk and discretion, and you are responsible for learning about and complying with the terms of use and other conditions related to these external websites.

  • Digital Information (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 by PTC can be found at our Cookies Statement.

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:

(i) to contact you and respond to your inquiries including on our products and services;

(ii) for business administration, including statistical analysis;

(iii) to personalize your visit to the Site, assist you while you use the Site;

(iv) to provide you with products announcement 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 better understand the needs and interests of our visitors and users; and

(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 managing the collaboration relationship with healthcare professionals

(viii) 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 voluntarily basis; if you choose to refuse to provide it, this will only mean that we will not be able to provide you the requested information or service; if you do choose to provide it, you can later change your mind and withdraw it at any time and without giving any reason;
  • 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 Site 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, such as but not limited to:  Website 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 PTC 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 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 may be accessible to PTC headquarters as well as to some PTC affiliates outside European Union (“EU”)/ European Economic Area (“EEA”), and selected vendors and partners, established in the EU or globally. Your personal information may be accessed by staff or suppliers in, transferred to and stored at, a location outside the EU or the EEA in which data protection laws may not afford the same level of data protection as the one in the EU/EEA. Where PTC processes personal information in countries that may not provide the same level of data protection as in the EU/EEA or in your own country, where you are resident, 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, in the form of standard contractual clauses, for any cross-border data transfers from the EU to controller or processors established in third countries, as adopted and approved by the European Commission, or by the competent supervisory authorities, with the aim to achieve an adequate level of data protection of the personal information of those individuals and to ensure the security of the processing.

For residents of EEA – whenever we transfer your information outside of the EEA, we will either ask for your explicit consent or take any and all necessary steps to ensure that adequate safeguards are put in place to protect your information (unless we are permitted under applicable data protection law 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 as mentioned above.

Your Privacy Rights:

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 the 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: https://edpb.europa.eu/about-edpb/board/members_en.

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 Unit 1, 52-55 Sir John Rogerson’s Quay, Dublin 2, D02 NA07, Ireland or send us your request via email to dataprivacy@ptcbio.com

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 unauthorised 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.

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 particular 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 .

Social plugins.

We use 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 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 website (e.g. Facebook) before browsing in our Site, the social plugin allows that social media website to receive information about your visit to our Site. The social plugin may collect this information from any visitor who has logged into social networks, whether they specifically interact with the plugin on our Site (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 Site with other users of their social media website.

To share our articles and opinions to your personal social networks, our Site features social plugins from:

  • Facebook Inc., 1601 Willow Road, Menlo Park, California, 94025, USA (“Facebook”)
  • Twitter Inc., 1355 Market St., Suite 900, San Francisco, CA 94103, USA (“Twitter”) and

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 Videos:

To illustrate our Site, we have included herein videos from our PTC YouTube channel using YouTube’s privacy-enhanced mode. This mode may set cookies on your computer once you click on the YouTube video player, but YouTube should not store personally identifiable cookie information for playbacks of embedded videos using this privacy-enhanced mode. When the playback of embedded YouTube videos starts, the provider (YouTube) uses cookies to collect information about users behavior. According to YouTube, these are used, among other things, to capture video statistics, improve user-friendliness and prevent abusive practices.

Please note that if you’re logged in with a Google account, your data will be assigned directly to your account when you click on a video. If you do not wish to associate this information with your profile on YouTube, you must log out before activating the button.

For your information, Google stores your data (even for non-logged-in users) as usage profiles and evaluates this. According to Article 6 (1) (f) of GDPR, such evaluation is based on the legitimate interests of Google in the display of personalized advertising, market research and/or tailor-made design of its website. You have the right to object to the creation of these user profiles, and you must be directed to YouTube to use them.

For more information on data protection in YouTube, please refer to their privacy policy.

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

GL-DMD-0670 | July 2024