At Amicus, 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.
This Privacy Notice (the “Notice”) defines how Amicus processes the personal information of individuals. Personal Information, also known as the personal data according to GDPR (European Union General Data Protection Regulation), is the information on which an individual may be identified. Amicus’ representative for European data protection law purposes is Amicus Therapeutics Europe Limited with its principal place of business at Block 1, Blanchardstown Corporate Park, Ballycoolen Road, Blanchardstown, Dublin 15, D15 AKK1, Ireland. 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.
This Notice is specifically intended to provide information for our customers, including website users, Amicus shareholders, members of the public who interact with Amicus, patients that use Amicus products, clinical trial participants of Amicus 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 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 or to patients that take part in Amicus clinical trials. References to “Amicus”, “group”, “affiliates”, “we”, “us” and “our” are references to Amicus Corporation and its worldwide affiliates (to learn more about Amicus’ affiliates please visit: www.amicusrx.com/about-us/contact-us). Please read this Notice before using Amicus’ website (www.Amicusrx.com) 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 our Website or provision of your Personal Information constitute your agreement and consent to the collection, use and disclosure of your Personal Information as outlined in this Notice.
We may process the following categories of Personal Information about you including but not limited to:
See the “Why We Process Your Personal Information” section of this Notice for more information about how we use these categories of personal information.
In most cases, Amicus will collect information directly from you although sometimes we will obtain information about you from public or third-party information sources including (but not limited to):
Amicus will only process 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 process the General, Professional, Health, Biometric/Genetic and Digital Personal Information may include:
Amicus will process 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’ risk management and drug safety obligations).
Amicus processes personal information based on one or more of the following conditions:
In addition to the above, where Amicus processes special categories of data about individuals in specified jurisdictions (including the European Union and the European Economic Area) – 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 relies on the following conditions, including, but not limited to:
Amicus headquarters are in the United States of America and in the United Kingdom, however Amicus’ operations are also in Asia, Australia, USA and Europe. Personal information about you may be accessible to Amicus headquarters as well as to some Amicus 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 Amicus 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, Amicus 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 Amicus, 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 controller 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. 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.
The confidentiality of Personal Information transmitted over the Internet cannot be guaranteed. Amicus 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. Amicus 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.
Amicus discloses personal information to third party recipients where this is reasonably permitted to pursue its legitimate business aims or provide a service you have requested and as required by applicable law. Your personal information will be disclosed only in accordance with applicable laws, and appropriate safeguards will be established, where possible, to protect your personal information. We may disclose personal information to any member of our group of companies. In order to conduct Amicus’ business, Amicus 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 (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 with health care compliance activities, if Amicus 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 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 employees, patients or others (e.g. visitors to Amicus premises).
Amicus does not undertake decisions based solely on automated processing, including profiling, of an individual unless we inform you otherwise.
We will take all steps reasonably necessary to ensure that your data 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 is stored on secure servers and accessed and used subject to our security policies and standards. Amicus 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 employees whose duties reasonably require such information and third parties with whom Amicus 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 Amicus to do so. Your information that is no longer needed is either irreversibly anonymized (and the anonymized information may be retained) or securely destroyed.
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 at any time by contacting us as set out below.
Under applicable laws and subject to any legal restrictions, you may have the right to request us to:
Your exercise of the above mentioned rights is subject to certain exemptions to safeguard the public interest and our own legitimate interests. If you decide to exercise any of these rights, we will check your entitlement, we may 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 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’ 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
This section addresses the California Consumer Privacy Act (CCPA), to be effective as of January 1, 2020 which provides additional rights and protections related to personal information of California residents.
A) “Do Not Sell My Data”. The CCPA requires companies that sell personal information to provide California residents a “Do Not Sell My Data” opt-out option, as well as an opt-in option for minors under 16 years of age.Amicus does not and will not sell the personal information we collect and therefore we do not include these options on our website.
B) Request to Know & Request to Delete.
If you are a California resident covered by the CCPA, you are permitted to: (1) request that Amicus disclose to you your Personal Information that we process, and (2) request that we delete your Personal Information. You also have the option to designate an authorized agent to make a request on your behalf. You may submit a request to Amicus by completing the CCPA Request Form. The CCPA Request Form may be obtained at www.amicusrx.com/content/dl/CCPA-Request-Form.docx Once completed, it can be submitted in one of the following ways: (1) via e-mail to the address: dataprivacyofficer@amicusrx.com or (2) via post to the address: Amicus Therapeutics Inc., 47 Hulfish St, Princeton, NJ 08542, attention Data Privacy Office or by calling the toll-free number, 844-927-2010. After you submit the completed CCPA Request Form, we will be in touch with you to verify your identity (and also your authority to make the request on another’s behalf, if applicable), including information that will enable us to confirm that you are a California resident. Our Data Privacy Office will consider various factors when deciding the steps needed to verify your identity (and also your authority to make the request, if your request is made regarding someone other than yourself). Factors may include, among other things, (a) type, sensitivity and value of the Personal Information about which the request relates; (b) risk of harm posed by any unauthorized access or deletion; (c) likelihood that fraudulent or malicious actors would seek the Personal Information; (d) whether the Personal Information to be provided to verify identity is sufficiently robust to protect against fraudulent requests or being spoofed or fabricated; (e) manner in which the business interacts with the person(s) about the whom the request relates; and (f) available technology for verification. If verification has been successful, we will then respond within legally mandated timeframes (typically within forty-five (45) days). Our response may be to provide the information requested, or to make the requested deletion. In some instances, our response may advise that a legal exemption applies and we are not able to comply with the request (such as for a request to delete). You have a right not to receive discriminatory treatment by Amicus for the exercise of the privacy rights conferred by the CCPA. If you have any concerns or would like more information regarding these rights, please contact Data Privacy Officer by email at dataprivacyofficer@amicusrx.com
Amicus reserves the right to amend this Privacy Notice from time to time to reflect technological advancements, legal and regulatory changes, and Amicus’ business practices, subject to applicable laws. If Amicus 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 view any amendments when you visit our Website from time to time to stay informed of how we are using your personal information.
If you have any questions in relation to this Privacy Notice, or you want to obtain more information about Amicus’ privacy practices, please contact our Data Privacy Officer by email at dataprivacyofficer@amicusrx.com.
This Privacy Notice is updated annually and was last updated on February 8, 2021