Last updated: September 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 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:
We use the following strictly necessary cookies:
|Cookie name||Cookie Type||Source||Expiry||Purpose|
|wp-settings-1||Strictly necessary cookies||duchenneandyou.eu||1 year||Caching library content|
|wp-settings-time-1||Strictly necessary cookies||duchenneandyou.eu||1 year||Caching local device time|
We use the following advertising cookies:
|Cookie name||Cookie Type||Source||Expiry||Purpose|
|Google Analytics*||Advertising/Targeting||analytics.google.com||2020||Capturing device information for tracking purposes and SEO monitoring|
|Google Tag Manager||Advertising/Targeting||tagmanager.google.com||2020||Capturing click event information such as PDF downloads or popup opens to validate valuable content|
To opt out of being tracked by Google Analytics across all websites visit tools.google.com/dlpage/gaoptout. 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
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 www.aboutcookies.org, www.allaboutcookies.org or https://cookiepedia.co.uk/ 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 International Limited, located at 5th Floor, 3 Grand Canal Plaza, Grand Canal Street Upper, Dublin 4 D04 EE70, Ireland, Phone: +353 1 906 8700, www.ptcbio.ie (“PTC”). This Site is addressed to residents of the EU only and not to residents in the UK or 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.
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.
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 may 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.
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.
IMPORTANT DAMAGE DISCLAIMERS AND LIMITATIONS. PTC SPECIFICALLY DISCLAIMS ANY LIABILITY, WHETHER BASED IN CONTRACT, TORT, STRICT LIABILITY OR OTHERWISE, FOR ANY DIRECT, INDIRECT, INCIDENTAL, CONSEQUENTIAL, OR SPECIAL DAMAGES ARISING OUT OF OR IN ANY WAY CONNECTED WITH ACCESS TO OR USE OF THIS SITE, EVEN IF PTC HAS BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES, INCLUDING BUT NOT LIMITED TO RELIANCE BY ANY PARTY ON ANY CONTENT OBTAINED THROUGH THE USE OF THIS SITE, OR THAT ARISES IN CONNECTION WITH MISTAKES OR OMISSIONS IN, OR DELAYS IN TRANSMISSION OF, INFORMATION TO OR FROM THE USER, INTERRUPTIONS IN TELECOMMUNICATIONS CONNECTIONS TO THIS SITE OR VIRUSES, WHETHER CAUSED IN WHOLE OR IN PART BY NEGLIGENCE, ACTS OF GOD, TELECOMMUNICATIONS FAILURE, THEFT OR DESTRUCTION OF, OR UNAUTHORIZED ACCESS TO THIS SITE, OR RELATED INFORMATION OR PROGRAMS. Because some countries and states do not allow the exclusion or limitation of liability for consequential or incidental damages, all disclaimers, limitations and other terms of this paragraph shall apply to the greatest extent permitted by law.
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 International Limited, located at 5th Floor, 3 Grand Canal Plaza, Grand Canal Street Upper, Dublin 4 D04 EE70, 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.
Emails: When you send us an email at firstname.lastname@example.org 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 email@example.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.
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.
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 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:
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 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.
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.
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.
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:
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 5th Floor, 3 Grand Canal Plaza, Grand Canal Street Upper, Dublin 4, Ireland or send us your request via email to firstname.lastname@example.org
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.
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 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 .
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:
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.
If you have any questions, comments or suggestions about this Privacy Statement or our privacy practices, please contact us at: email@example.com
Please ensure all questions are answered before submitting
When providing your feedback, no personal information will be collected, linked or shared with other parties, websites or social media platforms.
Thank you for submitting your response!
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.