Privacy Statement

Thank you for visiting the “aboutAADC.eu” website (the “Site”) which is operated by PTC Therapeutics GT, Inc. located at 500 Warren Corporate Center Drive, Warren, NJ 07059, United States, Phone: +1 908 222 7000 (“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 Site. We are committed to respecting and protecting your privacy.

 

aboutAADC.eu is a disease awareness website, dedicated to those who have had their lives touched by Aromatic L-amino acid decarboxylase (AADC) deficiency. This website is designed to raise awareness on the symptoms of Aromatic L-amino acid decarboxylase (AADC) deficiency and support the general public with the provision of general information and resources to help them seek a timely and accurate diagnosis. Its content is intended for audience outside the US, Ireland and the UK.

 

If you are a Healthcare Provider, please refer to AADCinsights.eu for more specific information on how to diagnose and manage aromatic L-amino acid decarboxylase (AADC) deficiency.

 

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.

 

 

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:

Quality and Safety (Adverse Event) Reporting: This Site does not promote PTC’s products. It offers only informational material on the diagnosis and management of AADC deficiency. If you wish to 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.

 

Third party resources/Publications: We may provide you with links to or information about third-party resources. For example, we provide caregivers with a variety of websites and support groups to help them find the latest publications in the field of AADC deficiency, and their respective links for further information. A link to a third-party website or digital service does not mean that PTC endorses it or the quality or accuracy of information presented on it. If you decide to visit a third-party website or service, you will be automatically redirected to such third-party website. Thus, you will be subject to its privacy practices and not to this Privacy Statement. We encourage you to carefully read the privacy policy or statement and other legal notices of each website or service that you visit.

 

Scientific Resources / Interactive clinical cases: To reinforce your understanding on AADC deficiency we provide you several informational materials on differential diagnosis, interactive clinical cases, clinical diagnosis checklist, symptoms infographics, a glossary with helpful terms and hypothetical patient cases. You have also the possibility to download and fill out a symptom questionnaire to bring to your child’s appointment to help you explain what your child is experiencing. Please note that no personal data will be collected through your navigation to scientific materials.

 

• 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.

 

Embedded videos: in order to educate the general public about AADC Deficiency and its management PTC’s website may include plugins from the video portal Vimeo. The provider is Vimeo Inc., 555 West 18th Street, New York, New York 10011, USA. Embedded content from other websites behaves in the exact same way as if you have visited the other website.

 

To increase the protection of your data when visiting our website, the plugins are integrated into the page in such a way that they can only be activated by an additional click. This integration ensures that when a page of our website containing such plugins accessed, no connection is yet established with the servers of the respective social network. Only when you activate the plugins does your browser establish a direct connection to the Vimeo servers.

 

Further information on the way in which Vimeo collects and uses your data can be found in the Vimeo data privacy statement. If you have a Vimeo user account and do not want Vimeo to collect data about you via this website and link it to your member data saved at Vimeo, you must log out of your Vimeo account before visiting this website.

 

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) To perform the HCP verification process and confirm which verified HCPs can access the exclusive expert-led educational content;

 

(iii) for business administration, including statistical analysis;

 

(iv) to personalize your visit to the Site or assist you while you use the Site;

 

(v) 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;

 

(vi) 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;

 

(vii) 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.

 

 

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 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.

 

 

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.

 

 

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 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, UK and Canada. Personal information about you may be accessible to PTC headquarters as well as to some PTC affiliates outside your country of residence 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 your country of residence, in which data protection laws may not afford the same level of data protection as the one granted in your country.

 

Where PTC processes personal information in countries that may not provide the same level of data protection as in your country of residence, such data transfer will be conducted in compliance with the international data transfer restrictions that apply under applicable data protection laws.

 

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, 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.

 

You may contact us at dataprivacy@ptcbio.com, for more information about the safeguards that we have put in place to protect your personal Information and your privacy rights when we make cross-border transfers of your personal Information

 

 

In certain circumstances, local privacy laws may give you rights with respect to your personal information, as described in more detail below. 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.

For EU residents: 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

 

 

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.

 

 

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