Amicus Ignite is a proactive community funding programme for initiatives that support people living with Pompe Disease.

OUR COMMITMENT TO PRIVACY

At Amicus, we recognise the importance of, and are fully committed to protecting the personal information of all individuals with whom we interact – including patients, clinical trial participants, members of the public, patient organisation representatives, employees, regulatory authorities’ representatives, healthcare organisation representatives and healthcare professionals.

ABOUT THIS GENERAL PRIVACY NOTICE

This privacy notice (the “Notice”) sets out how Amicus Therapeutics UK Limited, the administrator of the Amicus Ignite programme, and the data controller for personal data collected via this website, collects, processes and safeguards personal data about individuals (“Personal Data”). It is intended to assist you in making informed decisions when using this Website and when you provide us with Personal Data for the purpose of the Amicus Ignite programme.

SCOPE OF THIS PRIVACY NOTICE

This Notice is specifically intended to provide information to users of this Website and to individuals who provide Personal Data to Amicus for the purpose of the Amicus Ignite programme.

References to “Amicus”, “group”, “affiliates”, “we”, “us” and “our” are references to Amicus Corporation and its worldwide affiliates.

Please read this Notice before using this Amicus website (the “Website”) or otherwise providing your Personal Data to us. By visiting our Website or by providing us with your personal data you agree and consent to the collection, use and disclosure of your Personal Data as outlined in this Notice.

WHAT PERSONAL DATA DO WE COLLECT?

We may collect and process the following Personal Data about you, including but not limited to:

► General information such as your name, the organisation that you work for, as well as your email address, phone number, and other information such as photographs and digital imagery, your communications preferences your opinions and any queries that you raise with Amicus.

► Professional information such as your job title, educational information, professional qualifications, work experience, professional networks, programs and activities in which you participate;

► Digital information generated from your use of Amicus’ Website, such as IP address, your browser type and version, time zone setting, browser plug-in types and versions, operating system and platform and other data transmitted via cookies. Information about use of cookies by Amicus can be found at our cookies statement.

HOW WE OBTAIN YOUR PERSONAL DATA

In most cases, Amicus will collect Personal Data directly from you.

► Amicus may collect information from your computer or other device you use when visiting Amicus’ Website 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.

► Personal Data may be shared within the Amicus Group of Companies, which includes our worldwide affiliates, and Publicis Langland, Amicus’ data processor administering the Amicus Ignite Funding Programme on behalf of Amicus.

WHY WE PROCESS YOUR PERSONAL DATA

Amicus will only process your Personal Data for the purpose that we inform your about and as permitted by applicable laws, which may vary depending on where you live, and where Amicus operates. The purposes of the data processing activities may include:

1) Managing the Amicus Ignite programme ► to administer the Amicus Ignite Programme, including in relation to assessment and review of funding applications and to carry out obligations (if any) arising from any agreements;

2) Managing our relationships/communications ► for example, responding to questions and comments or inquiries about funding applications, inviting individuals to Amicus events, making proposals for future engagements or other arrangements, Amicus Ignite may also send you information about the Amicus Ignite programme.

3) Market Research ► processing Personal Data about individuals for lawful market research purposes. We collect information through surveys and interviews to help us improve and in this context we may request your participation in surveys and questionnaires relating to the Amicus Ignite Programme.

4) To ensure our Website functions ► to ensure that content from our Website is presented in the most effective manner for you and for your device.

5) Reorganising or make changes to our business ► In the event that we are (i) subject to negotiations for the sale of our business or part thereof to a third party, (ii) is sold to a third party or (iii) undergo a re-organisation, we may need to transfer some or all of your Personal Data to the relevant third party (or its advisors) as part of any due diligence process or transferred to that re-organised entity or third party and used for the same purposes as set out in this privacy notice or for the purpose of analysing any proposed sale or re-organisation.

6) Legal or regulatory obligations and the directions of law enforcement, regulators 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). 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.

7) Any other purpose that is relevant to the relationship between Amicus and you.

Amicus will process Personal Data for further purposes, where lawful to do so (such as for archiving,) or when legally obliged to do so (such as reporting information for Amicus’ risk management and drug safety obligations).

LEGAL BASIS OF PROCESSING

Amicus processes Personal Data based on one or more of the following conditions:

• Where you have provided your consent (in which cases, such consent can be withdrawn at any time and without giving any reason);
• Where it is necessary to comply with contractual obligations with you;
• Where the processing is necessary for our compliance with a legal obligation;
• Where the processing is necessary to protect the vital interests of an individual;
• Where processing is necessary in the public interest or for a public task; or
• Where the processing is in Amicus’ legitimate interest, for example, to enable Amicus to administer the Amicus Ignite Programme and to prevent crime (such as fraud, financial crime and theft of intellectual and industry property and to ensure the integrity of its operations).

WHERE WE PROCESS AND HOW WE TRANSMIT YOUR PERSONAL DATA

Amicus’ headquarters are in the United States of America. Amicus has affiliates throughout Europe as well as in Japan, Canada and Australia. The Personal Data that you provide may be accessible to Amicus headquarters as well as Amicus affiliates inside and outside the European Union (“EU”)/European Economic Area (“EEA”), and selected vendors and partners, established in the EU or globally.

Your Personal Data 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. Amicus implements reasonable and appropriate technical and organisational security measures in order to protect your Personal Data from unauthorised access, use or disclosure.

WHAT ABOUT TRANSMISSION VIA INTERNET AND OTHER THIRD PARTY WEBSITES LINKED TO OUR WEBSITE?

The confidentiality of Personal Data transmitted over the Internet cannot be guaranteed. Amicus urges you to exercise increased caution when transmitting personal data over the Internet, as we cannot absolutely guarantee that unauthorised third parties will not gain access to your Personal Data.

This Website may contain links to third party 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 Data 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.

WHERE WE DISCLOSE YOUR PERSONAL DATA

Amicus discloses Personal Data to third party recipients where this is reasonably permitted to pursue its legitimate business aims and as required by applicable law. Your Personal Data will be disclosed only in accordance with applicable laws, and appropriate safeguards will be established, where possible, to protect your Personal Data.

Amicus has engaged a third-party service provider called Publicis Langland to assist with the administration of the Amicus Ignite programme and therefore, all personal information that is provided through this website and in the grant application documentation, will be provided to this third party service provider. The privacy notice of Publicis Langland can be accessed here.

Funding applications submitted to Amicus through this website will also be shared with members of the judging panel (comprising representatives from patient organisations, healthcare professionals as well as members of the senior Amicus leadership team). All Personal Data that you provide pursuant to a grant application will also be provided to these individuals who will use it solely for the purpose of the application review process.

Amicus may be required to disclose Personal Data to third parties such as public/regulatory authorities/governmental bodies (government, including social and benefits departments), or if Amicus is under a duty to disclose or share individuals’ personal data in order to comply with any legal or regulatory obligation or request.

AUTOMATED DECISION MAKING AND INDIVIDUALS’ RIGHTS

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

HOW WE SECURE AND HOW LONG WE RETAIN YOUR PERSONAL DATA

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 Personal Data 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 Data protected from unauthorised 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 Data 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 Data appropriately and securely.

We will retain your Personal Data for no longer than is necessary for the processing purpose(s) for which your Personal Data was collected and any other permitted associated purpose. Personal Data may be retained for a longer duration where applicable laws or regulations require, or allow Amicus to do so.

ADDITIONAL RIGHTS

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

1. Provide you with further details on the processing of your Personal Data;
2. Provide you access to your personal data that we hold about you;
3. Update any inaccuracies in the Personal Data we hold that is demonstrated to be inaccurate or incomplete;
4. Delete any Personal Data 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 Personal Data, 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.

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 Data 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 endeavour 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 or for UK citizens the Information Commissioner’s Office here: https://ico.org.uk/.

To exercise your individual data protection rights please contact our Data Protection Officer by email at dataprivacyofficer@amicusrx.com.

OUR CHANGES TO THIS PRIVACY NOTICE

Amicus reserves the right to amend this privacy notice from time to time. If Amicus changes its privacy practices, an updated version of this Privacy Notice will reflect those changes by posting any revisions on http://www.amicusrx.co.uk/privacy-policy/ with the respective update of the effective date listed on the bottom of this Notice. All changes to this Notice shall become fully effective thirty days (30) after the update date posted below. 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 Data.

CONTACT 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 Protection Officer by email at dataprivacyofficer@amicusrx.com.

Alternatively, letters may be sent to the following addresses:

► For residents of the United Kingdom

The Data Privacy Officer

Amicus Therapeutics UK Ltd
One Globe Side, Fieldhouse Lane,
Marlow, SL7 1HZ
United Kingdom

► For residents of the European Economic Area/EU please contact our EU Representative at:

The Data Privacy Officer

Amicus Therapeutics Europe Limited
Block 1, Blanchardstown Corporate Park,
Ballycoolen Road, Blanchardstown,
Dublin 15
D15 AKK1

January 2025