Last updated: October 2019

What Are Cookies?                                             

When you visit our website, it may store or retrieve information in your browser, mostly in the form of cookies. Cookies are small text files that are transferred to your computer’s hard disk by a website. This information might be about you, your preferences or your device and is typically used to make the site work as you expect it. The information does not usually directly identify you, but it can give you a more personalized web experience.

What Types of Cookies Do We Use?

There are two broad categories of cookies: First party cookies, served directly by us to your device and third-party cookies, which are served by a third party e.g. Google.

Cookies can remain on your computer or mobile device for different periods of time. Some cookies are “session cookies”, meaning that they exist only while your browser is open. These are deleted automatically once you close your browser. Other cookies are “permanent cookies”, meaning that they survive after your browser is closed. They can be used by the website to recognize your computer when you open your browser and browse the Internet again.

This website uses the cookies that perform two functions, namely:

  1. Strictly Necessary Cookies; and
  2. Advertising/Targeting Cookies.

1.Strictly Necessary Cookies – These cookies are essential in order to enable you to navigate around the website and use its features, such as accessing secure areas of the website. These cookies don’t gather information about you that could be used for marketing or remembering where you have been on the internet. This category of cookies cannot be disabled.

We use the following strictly necessary cookies:

Cookie name Cookie Type Source Expiry Purpose
wp-settings-1 Strictly necessary cookies 1 year Caching library content
wp-settings-time-1 Strictly necessary cookies 1 year Caching local device time



  1. Advertising/Targeting cookies – are used to deliver advertisements more relevant to you but can also limit the number of times you see an advertisement and be used to chart the effectiveness of an ad campaign by tracking users’ clicks. They are usually placed by third-party advertising networks with a website operator’s permission but can be also placed by the operator. These cookies can remember that you have visited a website, and this information can be shared with other organizations, including other advertisers. Without these cookies, online advertisements you encounter will be less relevant to you and your interests.

We use the following advertising cookies:

Cookie name Cookie Type Source Expiry Purpose
Google Analytics* Advertising/Targeting 2020 Capturing device information for tracking purposes and SEO monitoring
Google Tag Manager Advertising/Targeting 2020 Capturing click event information such as PDF downloads or popup opens to validate valuable content



*Google Analytics

This website uses Google Analytics, a web analytics service provided by Google, Inc. (“Google”). Google Analytics uses “cookies”, which are text files placed on your computer, to help the website analyse how users use the site. The information generated by the cookie about your use of the website (including your IP address) will be transmitted to and stored by Google on servers in the United States. Google will use this information for the purpose of evaluating your use of the website, compiling reports on website activity for website operators and providing other services relating to website activity and internet usage. Google may also transfer this information to third parties where required to do so by law, or where such third parties process the information on Google’s behalf. Google will not associate your IP address with any other data held by Google. You may refuse the use of cookies by selecting the appropriate settings on your browser. However, please note that if you do this you may not be able to use the full functionality of this website. By using this website, you consent to the processing of data about you by Google in the manner and for the purposes set out above.

For more details on how Google processes your data please visit Google’s Privacy Policy available at

To opt out of being tracked by Google Analytics across all websites visit Compatible with Chrome, Internet Explorer 8–11, Firefox and Opera.

How Do We Use Information We Collect from Cookies?

We use software tools such as Web server logs to gather information about our website users’ browsing activities, in order to constantly improve our website and better serve our customers. This information assists us in designing and arranging our Web pages in the most user-friendly manner and to continually improve our Website to better meet the needs of our customers and prospective customers.

Web server logs allow us to count how many people visit our website and evaluate our website’s visitor capacity. We do not use these technologies to capture your individual email address or any personally identifying information about you although they do permit us to send focused online banner advertisements or other such responses to you.

How to control or delete cookies

Because we respect your right to privacy, you can choose not to allow some types of cookies. You have the ability to accept or decline cookies by modifying the cookies settings in your browser. You can also delete cookies that have already been set. However, note that blocking some types of cookies may impact your experience with the site and the services we are able to offer. If you have accepted our use of some or all cookies, the above information relates to cookies used on this website only. Please note that any consent to accept or to decline cookies is limited to this website only and not to other third-party owned websites or any other webpages, which may be hyperlinked to this website. For more information on cookies used by those websites, please refer to the specific privacy notice or cookie policy on those websites.

If you wish to restrict or block web browser cookies which are set on your device, then you can do this through your browser settings; the Help function within your browser should tell you how or you can click on one of the links below to go directly to the user manual for your browser:

Alternatively, you may wish to visit, or which contain general information about cookies and comprehensive information on how to modify the cookie settings on a wide variety of browsers and how to delete cookies from your computer. For information on how to do this on the browser of your mobile phone or tablet you will need to refer to your device manual.


Thank you for visiting the “Duchenne and You” website (the “Site”) funded and developed by PTC Therapeutics Ltd, located at Building 2, Ground Floor, Guildford Business Park, GUILDFORD, Surrey GU2 8XG, United Kingdom, Phone: +44 (0) 1483 246865 (“PTC”). This Site is addressed to residents of the UK and Ireland. The information provided on this Site is intended for general and educational information on Duchenne muscular dystrophy and is not intended to be a substitute for advice provided by a doctor or other qualified healthcare professional.

PTC grants you the right to use this Site subject to the terms and conditions of use set forth below (this “Terms of Use Agreement”). These Terms refer to the following additional items, which also apply to the use of our Site:

  • Our Privacy Statement, which sets out the terms on which we may process any personal data we collect from you, or that you provide to us. By using our Site, you consent to such processing and you warrant that all data provided by you is accurate.
  • Our Cookie Statement, which sets out information about the cookies on our Site.

Changes to Our Site: Without prejudice to your rights under applicable law, we reserve the right to update this Site without prior notice to reflect technological advancements, legal and regulatory changes and good business practices by posting such changes on the Site. However, please note that any of the content on our Site may be out of date at any given time, and we are under no obligation to update it. We do not guarantee that our Site, or any content on it, will be free from errors or omissions.

IMPORTANT NOTICE: The information provided on this Site is for general informational and educational purposes only. This Site may provide information about medical conditions and their treatment. PTC makes no representation that material on this Site is appropriate or available for use outside of the UK or Ireland. Individuals that choose to access this Site from other locations do so on their own initiative and are responsible for compliance with local laws if and to the extent that local laws are applicable. Please read and review this Terms of Use Agreement carefully before accessing or using this Site. By accessing or using this Site, you acknowledge that you have read, understood and agreed to this Terms of Use Agreement. If you do not agree to this Terms of Use Agreement, you may not access or use this Site.

Disclaimer of Warranty: The information on this Site is provided “AS IS” without warranty of any kind whether express or implied, including, but not limited to, the implied warranties of merchantability, fitness for a particular purpose, or non-infringement. PTC will use reasonable care to ensure that information is accurate at the time it is added to this Site but cannot guarantee this and does not accept any liability to update the information. In addition, PTC does not accept any liability, howsoever arising, for the accuracy, completeness, use of or reliance on the information contained on this Site. The information may be changed by PTC at any time.

Historical Information Certain information on this Site may be of an historical nature. All historical information contained in the documents or presentations set out in this Site should be understood as referring to events and circumstances as they existed on the date that the relevant documents or presentations were first published or the relevant recordings were made.

No Professional Medical Advice: This Site may contain general information relating to various medical conditions and their treatment or direct or indirect references to PTC’s products or product candidates.  The content available through this Site, or communicated to you directly through the services, is for informational and educational purposes only and is not a substitute for medical judgment, advice, diagnosis, or treatment of any health condition or problem. You should not rely on information contained via the Site, if applicable, for diagnosing, treating, curing, preventing, managing or otherwise addressing health problems. You should consult a qualified healthcare provider if you have or suspect you have any health problems or should you have any healthcare-related questions. You should never disregard medical advice or delay in seeking it because of something you have read here.

Site Content: All text, graphics, photographs, trademarks, logos, visual interfaces, artwork, computer code and all other related content contained on this Site is owned by PTC or third parties and is protected by trade dress, copyright, patent and trademark laws, and various other intellectual property rights and unfair competition laws. Any reproduction, publication, further distribution or public exhibition of materials provided through this Site, in whole or in part, is strictly prohibited. You must not, distribute, modify, transmit, reuse, repost, or use the content of this Site for public or commercial purposes, including the text, images, audio, or video, without the express prior written consent of PTC.

Viruses: We do not guarantee that our Site will be free from bugs or viruses. You are responsible for configuring your information technology, computer programs and platform in order to access our Site. You should use your own virus protection software.

You must not misuse our Site by knowingly introducing viruses, trojans, worms, logic bombs or other material that is malicious or technologically harmful. You must not attempt to gain unauthorized access to our Site, the server on which our Site is stored or any server, computer or database connected to our Site. You must not attack our Site via a denial-of-service attack or a distributed denial-of-service attack. We will report any such breach to the relevant law enforcement authorities and we will cooperate with those authorities by disclosing your identity to them. In the event of such a breach, your right to use our Site will cease immediately.

Links: This Site may contain links to web sites owned or operated by third parties. The linked sites are not under the control of PTC, which is not responsible for the content available on any linked sites. Such links do not imply endorsement of material on any linked sites and PTC disclaims all liability with regard to your access to such linked sites. PTC provides links to other web sites as a convenience to users, and access to such linked sites is at your own risk.

Privacy: PTC respects the privacy of its website users. Please refer to our Privacy Statement and our Cookie Statement for more information about how your personal information may be collected and processed via our Site.

Non-Confidential Information.

Subject to our Privacy Statement any communication or other material that you send to PTC through the internet or post on this website by electronic mail or otherwise, such as any questions, comments and suggestions, is and will be deemed to be non-confidential and PTC shall have no obligation of any kind with respect to it. PTC will be free to use any ideas, concepts, know-how or techniques contained in such communication for any purpose whatsoever, including but not limited to, developing, manufacturing and marketing products.

If you do not want PTC to use or disclose your information as described in this Terms of Use, you can (1) choose not to provide personal information via registration forms on this Site; (2) set your browser preferences and use web tools available to block the cookies sent in connection with your use of the Site; (3) follow the instructions to unsubscribe from PTC’s services included on the Site and the communications sent to you; or (4) email a request to unsubscribe from PTC’s services or to remove or update the personal information that you have provided to PTC from its systems at

Violations of this Terms of Use Agreement Failure to abide by this Terms of Use Agreement is a material breach of this Terms of Use Agreement for which PTC may pursue all rights and remedies it has pursuant to this Terms of Use Agreement, and any other rights and remedies it may have at law or in equity. Specifically, you agree that PTC may, in its sole discretion and without prior notice, terminate your access to this Site for violations of this Terms of Use Agreement or other agreements or guidelines which may be associated with your use of this Site.

Indemnity. You agree to defend, indemnify, and hold PTC, its officers, directors, partners, employees, agents, licensors, and suppliers, harmless from and against any claims, actions or demands, liabilities and settlements including without limitation, reasonable legal and accounting fees, resulting from, or alleged to result from, your violation of this Terms of Use Agreement.


Governing Laws. This Terms of Use Agreement and your use of the Site shall be governed by the laws of England and Wales and/or the laws of the country of your residence. Any legal action or proceeding related to this Site shall be brought exclusively before the courts of England and Wales  and/or the laws of the country of your residence.

Miscellaneous. If any provision of this Agreement is held to be unlawful, void or unenforceable, then such provision shall be severable without affecting the enforceability of all remaining provisions. PTC reserves the right to alter or delete materials from this Site at any time at its discretion.


Thank you for visiting the Duchenne and You website (the “Site”) which is operated by PTC Therapeutics Ltd, located at Building 2, Ground Floor, Guildford Business Park, GUILDFORD, Surrey GU2 8XG, United Kingdom, Phone: +44 (0) 1483 246865  (“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 UK and Ireland only. 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 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 acknowledge 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 acknowledgement of this Privacy Statement.

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 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 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.

Resources / Material Request: To promote the scientific knowledge we provide you the possibility to download free of charge 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.

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.

  • 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 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 or 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 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.

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 data 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 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.

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 controllers 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.



If you wish to exercise one of the above mentioned rights, please send us your request in writing to the following address:  PTC Therapeutics Ltd, located at Building 2, Ground Floor, Guildford Business Park, GUILDFORD, Surrey GU2 8XG, United Kingdom, or send us your request via email to

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:

In the United Kingdom the competent supervisory authority is the Information Commissioner’s Office (ICO); you can contact 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


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 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

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 .

Contact Us:

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

Our Use of Cookies

In addition to cookies that are necessary to operate this website, we use optional cookies to provide website functionality and give you the best possible experience. We won't set optional cookies unless you enable them. For more detailed information see our Cookie Statement , which explains among others, how to set your cookie preferences and how to recall your consent.

Cookie Settings

Some cookies are essential, others help us improve your experience by providing insights into how the website is used. Select one or more of the cookie types listed below, and then save your preferences. Refer to our Cookie Statement for more information.

Strictly Necessary cookies
Strictly necessary cookies enable core functionality such as security, network management, and accessibility.

I accept the advertising/targeting cookies
Advertising/targeting cookies, which we use to track user activity and sessions so that we can deliver a more personalized service, and (in the case of advertising cookies) which are set by the third parties with whom we execute advertising campaigns and allow us to provide advertisements relevant to you.