Privacy Notice

Our Commitment to Privacy

At Amicus Therapeutics Canada Inc. (“Amicus Canada”), we recognize the importance of, and are fully committed to protecting the privacy of personal information related to all individuals with whom we interact – including patients, clinical trial participants, members of the public, employees, regulatory authorities’ representatives, healthcare organizations’ representatives, healthcare professionals and business partners.

About this General Privacy Notice

This Privacy Notice (the “Notice”) describes how Amicus Canada collects, holds, uses and shares information about individuals who interact with through different mechanisms as well as how we protect the personal information of individuals. Amicus Canada complies with applicable Canadian privacy laws, including the Personal Information and Electronic Data Act.

Personal Information refers to information that can be used to identify you as an individual such as, but not limited to, your name, birth date, address, email address, telephone number. Amicus Canada Data Privacy Officer is reached by emailing dataprivacyofficer@amicusrx.com, or by writing to Amicus Therapeutics Limited, One Globeside, Fieldhouse Lane, Marlow, Buckinghamshire, SL7 1HZ, United Kingdom. The processing of Personal Information includes the collection, transfer, archiving and safeguarding the Personal Information of individuals. This Notice is designed to assist you in making informed decisions when using our website as well as our products and services, and it will be continuously assessed against new technologies, business practices, legal requirements, and our customers’ needs.

Scope of this Privacy Notice

This Notice is specifically intended to provide information for our customers, including website users, Amicus shareholders, members of the public who interact with Amicus Canada, patients that use Amicus Canada products, clinical trial participants of Amicus Canada sponsored clinical trials and individuals with whom we do business (including, but not limited to, staff at regulatory authorities, personnel of suppliers and partners and visitors to Amicus Canada offices). This Notice also provides information about specific privacy practices towards specific categories of data subjects such as to individuals who may be considered for employment (‘Job Applicants” or “Candidates’) by Amicus Canada or to patients that take part in Amicus Canada clinical trials. References to “Amicus”, “group”, “affiliates”, “we”, “us” and “our” are references to Amicus Corporation and its worldwide affiliates including Canada (to learn more about Amicus’ affiliates please visit: www.amicusrx.com/about-us/contact-us)). Please read this Notice before using this or other Amicus’ Canada websites or otherwise providing your Personal Information to us. In some instances, your explicit consent may be required under applicable law, and in those cases, we will seek your consent before collecting your Personal Information. In all other instances, your visit to one of our Websites or provision of your Personal Information constitutes your agreement and consent to the collection, use and disclosure of your Personal Information as outlined in this Notice. If you do not agree with this Privacy Notice, please do not continue to use Amicus and Amicus’ Canada sites.

What Personal Information Do We Collect?

We may collect and process the following categories of Personal Information about you including but not limited to:

General information such as name, postal and/or email address, phone number, date of birth, gender, preferred language, and other information such as photographs, digital imagery and voice recordings of you, banking information, government issued identification in accordance with applicable laws (e.g. driving license, passport, professional license number), agreements, your communications preferences; queries you make to Amicus.
Professional information, such as your job title, educational information, professional qualifications, work experience, professional networks, programs and activities in which you participated.
Health, biometric/genetic information related to identifiable or non-identifiable individuals, and only where necessary and strictly permitted under applicable laws (including your health status, health conditions you are experiencing and health information inferred from information that you have provided to us and in relation to Amicus’ risk management and drug safety programs, or for accessibility purposes for visitors to Amicus sites);
Digital information generated from your use of Amicus’ Canada websites, such as IP address, your browser type and version, time zone setting, browser plug-in types and versions, search history, access time, pages viewed, URLs clicked on, forms submitted, physical location, operating system and platform and other data transmitted via Cookies. Information about use of cookies by Amicus can be found at our Cookies Statement;
Product Use from data related to your use of our products (including feedback), preferences, your interactions with us, your preferred method of communication with us, and services you may use; and
Patient Support Programs related personal data collected for the purpose of your participation in that program.

See the “Why We Process Your Personal Information” section of this Notice for more information about how we use these categories of personal information.

How We Collect Your Personal INFORMATION?

In most cases, Amicus Canada will collect information directly from you although sometimes we will obtain information about you from public or third-party information sources. Directly from you, when you (including, but not limited to):

Where you have provided your consent (in which cases, such consent can be withdrawn at any time and without giving any reason);
Use your computer or any other devices when visiting Amicus’ Canada websites, apps and systems such as Internet Protocol (IP), domain name, Internet Service Provider (ISP), information about date and time of your request and other information provided by tracking technologies. Please see our Cookies statement
Create an account or profile on our website or apps.
Register to a service we offer.
Sign up to receive promotional and non-promotional materials.
Respond to surveys.
Engage with our employees (such as Medical Science Liaison, Sales Representatives, etc.).
Forms provided by the Amicus Canada virtual booth for you to submit an enquiry to our Medical Information department or commercial department.
Report an adverse event.
Contact our Medical Information Service.
Attend our meetings, in-person or on-line.

From other sources (including, but not limited to):

Publicly accessible sources.
Marketing Partners or Vendors.
Amicus Canada may collect information about Health Care Professionals from public or third-party sources for marketing, and research purposes and to verify professional information (including but not limited to access to publicly accessible information, national registries or third-party databases);
Health Care Professionals or other third parties may provide patient information to Amicus Canada where necessary under applicable drug safety and risk management laws; Information may be shared within the Amicus Group of Companies, which includes our worldwide affiliates.
Social Media platforms.

How do we use Your Personal Information and for which Purpose?

Amicus Canada will only use your personal information for purposes permitted by applicable laws, which may vary depending on where you live, and where Amicus operates. Purposes for which we use Personal Information may include:

Managing our business and providing you services ► to administer our business and services, for example for the improvement of our products and services, or to carry out our obligations arising from any agreements entered into between you and us. In order to provide services to you, including but not limited to educational events and other information, we may provide your personal information to service providers engaged by Amicus Canada to facilitate this provision to you.
Managing our relationships/communications with individuals ► for example, identifying you and where applicable, authenticating your access rights to our websites, systems and apps, responding to questions, online forms and comments or inquiries about applications, trials or services, reporting adverse events, inviting individuals to Amicus Canada events, making proposals for future service needs.
For collaboration and research purposes, for example to enable Amicus Canada 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;
Recruitment ► using professional information to assess the individual suitability for job openings at Amicus and Amicus Canada;
Market Research ► using information about individuals for lawful market research purposes. We collect information through surveys and interviews with patients and Healthcare Professionals to help us improve our products and services.
Direct Marketing ► we use personal information to provide promotional material and engage in marketing and promotional activities with individuals in accordance with applicable laws. (You have choices about this – see “Choices About Marketing” & “Contact Information” sections of this Notice).
To ensure our Websites function ► to ensure that content and services from our Websites, apps and systems is presented in the most effective manner for you and for your device.
Reorganizing or make changes to our business ► In the event that we (i) are subject to negotiations for the sale of our business or part thereof to a third party, (ii) are sold to a third party or (iii) undergo a re-organization, we may need to transfer some or all of your personal information to the relevant third-party (or its advisors) as part of any due diligence process or transferred to that re-organized entity or third party and used for the same purposes as set out in this Privacy Notice or for the purpose of analyzing any proposed sale or re-organization.
Legal or regulatory obligations and the directions of law enforcement and the court service ► to comply with our legal or regulatory requirements (reporting for the safety of information and product quality complaints or to fulfil transparency requirements with respect to transfers of value to you by us), to respond to requests from competent public authorities, to exercise or defend Amicus Canada against potential or actual litigations, to investigate and take action against illegal or harmful behaviors of users, etc. Where permitted, we will direct any such request to you or notify you before responding unless to do so would prejudice the prevention or detection of a crime.
Protect Interests ► to protect the vital interests of an individual, in the public interest or for a public task, where the use is in Amicus’ Canada legitimate interest, for example, Amicus Canada uses information for statistical research purposes, information about Amicus Canada visitors and supplier personnel, to provide security measures to protect Amicus’ Canada 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 its manufacturing and other operations).
Any other purpose that is relevant to the relationship between Amicus Canada and you.

Amicus Canada will use personal information for further purposes, where lawful to do so (such as for archiving, scientific or market research purposes) or when legally obliged to do so (such as reporting information for Amicus’ Canada risk management and drug safety obligations).

Special Categories of Data

In addition to the above, where Amicus Canada collects and uses Sensitive Personal Information about individuals – for example, information about individuals’ health, genetic, religious, ethnicity, religion, trade union membership, genetic and biometric data, sexual orientation or sex life – it shall only do so in accordance with applicable laws and regulations. For the processing of Special Categories of Data, Amicus Canada relies on the following conditions, including, but not limited to:

Where individuals provide explicit consent (such as patients consenting to appear in Amicus Canada marketing materials) (in which cases, such consent can be withdrawn at any time and without giving any reason);
Where required for rights and obligations related to employment;
Where required for vital interests of any individual;
Where use is necessary for the purposes of provision of healthcare or occupational medicine, pursuant to a contract with a healthcare professional and;
Where processing is necessary for scientific research.

Where AND HOW We Use and How we Share Your Personal INFORMATION?

Amicus Canada will not sell, share, or otherwise distribute your Personal Information to third- parties except as outlined herein. Amicus Canada may share your Personal Information on a need-to-know basis, and to the extent necessary to follow laws and regulations, and in the context of managing our relationship with you.

In order to conduct Amicus’ business, Amicus Canada may also disclose information to third-parties such as public/regulatory authorities/governmental bodies (government, including social and benefits departments), third parties that provide services to Amicus Canada (such as but not limited to service providers, conducting audits, providing IT services, assisting in or managing our clinical trials and studies), business partners and collaborators (such as external scientists), reviews and assist Amicus Canada with health care compliance activities, if Amicus Canada or substantially all of our assets are acquired by a third-party, in which case personal information held by us about individuals will be included as transferred assets, or if Amicus Canada is under a duty to disclose or share individuals’ information in order to comply with any legal or regulatory obligation or request. We may also disclose information to enforce any agreements we have with individuals; or to protect the rights, property or safety of Amicus Canada employees, patients or others (e.g. visitors to Amicus Canada premises).

Amicus headquarters are in the United States of America and in the United Kingdom, however Amicus’ operations are also in Asia, Australia, Canada and Europe. Personal information about you may be accessible to Amicus headquarters as well as to some Amicus affiliates outside Canada, and selected vendors and partners, established in Canada or globally. Your personal information may be accessed by staff or suppliers in, transferred to and stored at, a location outside Canada in which data protection laws may not afford the same level of data protection as the one in Canada. Where Amicus Canada uses personal information in countries that may not provide the same level of data protection as in Canada, Amicus Canada will implement reasonable and appropriate legal as well as technical and organizational security measures to ensure the security of the use 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 Amicus Canada, as well as executing, where necessary, adequate data transfer mechanisms, in the form of standard contractual clauses, for any cross-border data transfers from Canada to controller or processors established in third countries, as adopted and approved by the competent supervisory authorities, with the aim to achieve an adequate level of data protection of the personal information of those individuals. Whenever we transfer your information outside of Canada, 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 approved standard contractual clauses as mentioned above.

What About Transmission via Internet and Other third-party websites linked to Our Web Site?

The confidentiality of Personal Information transmitted over the Internet cannot be guaranteed. Amicus Canada urges you to exercise increased caution when transmitting Personal Information over the Internet, as we cannot absolutely guarantee that unauthorized third parties will not gain access to your Personal Information. Our Website may contain links to other websites which may have their own privacy policies and terms of uses. Links to third-party websites are provided as a convenience and are for informational purposes only. Amicus Canada has no control over such third-party websites or their content, and this Privacy Notice does not apply to such websites. We do not accept responsibility or liability for the policies or processing of your personal information by websites linked to or from our Website as we do not control the privacy practices of these third-parties and we strongly recommend you review the privacy settings they have set up directly with them by visiting their respective privacy related websites and policies.

Automated Decision Making and Individuals’ Rights

Amicus Canada does not undertake decisions based solely on automated processing, including profiling, of an individual unless we inform you otherwise.

How We Store, Protect and How Long We retain Your Personal INFORMATION?

We will take all steps reasonably necessary to ensure that your personal information is treated securely and in accordance with this Privacy Notice, applicable data protection laws and regulations and international security standards. All information you provide to us for authorized purposes is stored on secure servers or hosted by third-parties who have entered agreements with us that require them to respect this Privacy Notice and accessed and used subject to our security policies and standards. Amicus Canada has implemented reasonable physical, technical and managerial controls and safeguards to keep your personal information protected from unauthorized access, disclosure, alteration, and destruction. Such measures may include, but are not limited to: firewalls, access controls, encryption of information while it is in storage, separation of duties, and similar security protocols. Access to your personal information is limited to a restricted number of Amicus or Amicus Canada employees whose duties reasonably require such information and third-parties with whom Amicus contracts to carry out business activities on its behalf and only shared on a need-to-know basis. Our employees have been trained on the importance of privacy and how to handle and manage personal information appropriately and securely. Users are responsible for maintaining the secrecy of their own passwords.

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 Amicus Canada to do so. Your information that is no longer needed is either irreversibly anonymized (and the anonymized information may be retained) or securely destroyed.

Choices about Marketing

If we intend to use your information for marketing purposes or if we intend to disclose your information to any third-party for such purposes, we will inform you respectively. You have the right to object to personal information being used for the purposes of direct marketing and sending scientific information and newsletters. You can also exercise the right to unsubscribe at any time by contacting us as set out below.

Additional Rights

Under applicable laws and subject to any legal restrictions, you may have the right to request us to:

Provide you with further details on the collection and use of your personal information;
Provide you access to your personal data that we hold about you;
Update any inaccuracies in the personal information we hold that is demonstrated to be inaccurate or incomplete;
Delete any personal information that we no longer have a lawful basis to use;
Provide you or a third-party, with a copy of your data in a digital format (data portability);
Stop a particular processing when you withdraw your consent;
Object to any processing use 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
Restrict certain aspects of the use of your personal information;
Complain to your local data protection authority.

Your exercise of the above-mentioned rights is subject to certain exemptions to safeguard the public interest and legal obligations. If you decide to exercise any of these rights, we will check your entitlement, we will request to confirm your identity and in any case we shall respond within a calendar month from receipt of such a request, unless there are valid grounds for extending the response periods, essentially due to the need to confirm your identity, to request additional information or to ask you to specify or limit your request, in case your request is too general or too complex to be handled within the initial deadline. Amicus Canada may not be able to comply with a request where personal information has been destroyed, erased or made anonymous in accordance with applicable laws and regulations as well as with Amicus’ Canada record retention obligations and practices. In the event that we cannot satisfy a request with regards to your personal data, we will endeavor to provide you with an explanation, subject to any legal or regulatory restrictions. If we do not handle your request in a timely manner, 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. Further information and contact details of the competent supervisory authorities can be found here: https://edpb.europa.eu/about-edpb/board/members_en. To exercise your individual data protection rights please contact Data Privacy Officer by email at dataprivacyofficer@amicusrx.com, or by writing to Amicus Therapeutics Limited, One Globeside, Fieldhouse Lane, Marlow, Buckinghamshire, SL7 1HZ, United Kingdom.

Our changes to this Privacy Notice

Amicus Canada reserves the right to amend this Privacy Notice from time to time to reflect technological advancements, legal and regulatory changes, and Amicus’ Canada business practices, subject to applicable laws. If Amicus Canada changes its privacy practices, an updated version of this Privacy Notice will reflect those changes by posting any revisions on https://amicusrx.com//privacy-policy/ with the respective update of the effective date listed on the bottom of this Notice. We therefore encourage you to stay informed by viewing any amendments, from time to time, when you visit our Websites.

Contact Information

If you have any questions in relation to this Privacy Notice, you would like to review, correct or update Personal Information that you have provided to us or you want to obtain more information about Amicus Canada’ privacy practices, please contact our Canada Data Privacy Officer by email at dataprivacyofficer@amicusrx.com , or by writing to Amicus Therapeutics Limited, One Globeside, Fieldhouse Lane, Marlow, Buckinghamshire, SL7 1HZ, United Kingdom. This Privacy Notice is updated annually in August.