Raising Awareness of Aromatic L-amino Acid Decarboxylase (AADC) deficiency

• Webinar #1

  Monday, 29 March 2021

21:00–21:05

Welcome, introductions and objectives

Dr. Musaad Abukhaled

21:10–21:35

Genetic, metabolic and clinical basis of AADC deficiency

Prof. Ángeles García-Cazorla

21:35 – 22:00

The road to diagnosis: Clinical cases

Dr. Brahim Tabarki

22:00 – 22:20

Panel discussion & Q&A

22:00 – 22:30

Closing remarks

Dr. Musaad Abukhaled

AE-AADC-0220, March 2021

PRIVACY STATEMENT

Thank you for registering to our webinar “Raising awareness of aromatic Lamino acid decarboxylase (AADC) deficiency- Regional Webinar” (the “Webinar”). This Webinar is sponsored and organized 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 (together with its affiliates, “we”, “us”, “PTC”). PTC is responsible, as the data controller, for the collection and use of your personal data as collected and/or provided by you via the zoom webinar platform. We are committed to respecting and protecting your privacy.

This Webinar is designed to:

• Provide a high-quality educational and interactive meeting for healthcare professionals
• Highlight when to suspect neurotransmitter disorders
• Discuss the challenge of differential diagnosis of Aromatic L-amino Acid Decarboxylase (AADC) Deficiency and highlight key clinical clues to help differentiate cerebral palsy and other pediatric neurotransmitter disorders

It is addressed only to Healthcare Professionals residing in the Middle East region, and in particular to pediatric neurologists, neurologists, pediatricians, family physicians and primary contact physicians.

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

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

Personal Data Collected:

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

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

• Registration Form: When you are applying for this Webinar, your name and contact information will be collected and used in order to process and manage your registration, as well as to confirm your participation to the Webinar and respond to any requests from you. Such information may include your name, working address (center/hospital name), business email address, specialty, country of residence. Providing your personal data is voluntary; you have the right to withdraw your consent at any time, without giving any For more information on how to exercise your privacy rights please see the respective section below “Your Privacy Rights”.

Quality and Safety (Adverse Event) Reporting: This Webinar does not promote PTC’s products. It offers only informational material on the diagnose and management of Aromatic L-amino Acid Decarboxylase (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.

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) contact you and respond to any inquiries related to your participation to the Webinar;

(ii) to perform the HCP verification process and confirm which verified HCPs can participate to the Webinar;

(iii) for business administration, including statistical analysis;

(iv) to assist you while you participate to the Webinar;

(v) to provide you with information regarding health topics or disease states;

(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; and

(vii) 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 process information in order to manage your participation to the Webinar and send you communications about the Webinar and related content;
• Where it is necessary to comply with contractual obligations owed towards you;
• Where the processing is necessary for compliance with a legal obligation to which we are subject;
• Where the processing is necessary to protect the vital interests of an individual;
• Where the processing is necessary in the public interest or for a public task; or
• Where the processing is in PTC’s overriding legitimate interest; for example, PTC processes information for scientific and statistical research purposes, information about PTC visitors and supplier personnel, for scientific development, for the improvement of our products and services, to provide security measures to protect PTC’s employees, contractors, patients, information and other assets and to prevent crime (such as fraud, financial crime and theft of intellectual and industry property and to ensure the integrity of our manufacturing and other operations).

Sharing Information:

We may disclose your personal information to certain third parties listed below, including third parties who provide us with various business services. We will not sell or otherwise disclose your Personal Information without your consent, except where such disclosure is reasonably necessary for normal business operations and such disclosure is in accordance with all applicable data protection and privacy laws.

PTC Affiliates

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

Third Parties/Service Providers

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

We utilize the data processor noted below, who acts on our behalf, and provides the required processes in respect of the Webinar:

LEQAA Conferences Organizing

Office 5- 6 Owned by Sheikh Musallam salem – Musallam Bin Ham, Deira – Al Nahda, Dubai – P.O Box:182211

Privacy Policy of LEQAA Conferences Organizing

LEQAA Conferences Organizing is a UAE based company, supporting the coordination and execution of this Webinar, by administering the webinar platform set-up, as well as content and logistical support.

Law Enforcement

In certain circumstances we may be called upon to share your personal data as required or permitted by law to comply with a subpoena or similar legal process or government request, or when we believe in good faith that disclosure is legally required or otherwise necessary to protect our rights and property, or the rights, property or safety of others, including to advisers, law enforcement, judicial and regulatory authorities. We may also transfer your personal data to a third party that acquires all or part of our assets or shares, or that succeeds us in carrying on all or a part of our business, whether by merger, acquisition, reorganization or otherwise.

Regulatory Authorities

In cases where you wish to report any suspected adverse reactions, we may use the personal information you provide as necessary to submit complaint or adverse event reports to local and international health or pharmaceutical regulators, and as otherwise required by law.

Data Transfers:

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

Your Privacy Rights:

For any queries on the processing of your personal data, 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 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 unauthorized access, disclosure, alteration and destruction. However, no method of security or transmission over the Internet is entirely secure. You should always use caution when transmitting personal data over the Internet.

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

Data Retention:

We will retain your personal information for no longer than is necessary for the processing purpose(s) for which your information was collected and any other permitted associated purpose. Information may be retained for a longer duration where applicable laws or regulations require or allow PTC to do so. Your information that is no longer needed is either irreversibly anonymized (and the anonymized information may be retained for longer periods) or securely destroyed.

Contact Us:

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

AE-AADC-0218, March 2021