External Privacy Notice

(A) This Notice

This Notice is issued by each of the Controller entities listed in Section (N) below (together, the “Leducq organization”, “we”, “us” and “our”) and is addressed to individuals outside our organization with whom we interact, including researchers, visitors to our website, applicants and beneficiaries of our programs (e.g. the International Networks of Excellence program), and visitors to our premises (together, “you”). Defined terms used in this Notice are explained in Section (O) below.

This Notice may be amended or updated from time to time to reflect changes in our practices with respect to the Processing of Personal Data, or changes in applicable law. We encourage you to read this Notice carefully, and to regularly check this page to review any changes we might make in accordance with the terms of this Notice.

(B) Collection of Personal Data

Collection of Personal Data: We collect or obtain Personal Data about you from the following sources:

• Data provided to us: We obtain Personal Data when those data are provided to us (e.g., where you contact us via email or telephone, or by any other means, or when you submit a grant application).
• Relationship data: We collect or obtain Personal Data in the ordinary course of our relationship with you (e.g., you agree to join our email list to get the latest Leducq organization-related news and updates, you join one of our events, you apply to our programs, (e.g. the International Networks of Excellence program).
• Data you make public: We collect or obtain Personal Data that you manifestly choose to make public, including via research institutions or social media (e.g., we may collect information from your social media profile(s), if you make a public post about us).
• Website data: We collect or obtain Personal Data when you visit our Website or use any features or resources available on or through our Website.
• Registration details: We collect or obtain Personal Data when you use, or register to use, any of our Website or events.
• Third party information: We collect or obtain Personal Data from third parties who provide it to us (e.g., institutions for the benefit of named individual investigators; law enforcement authorities; etc.).

(C) Creation of Personal Data

We also create Personal Data about you in certain circumstances, such as records of your interactions with us, and details of your past interactions with us. We may also combine Personal Data from our Website or services including where those data are collected from different devices.

(D) Categories of Personal Data we Process

We Process the following categories of Personal Data about you:

• Personal details: given name(s); preferred name; and photograph.
• Demographic information: nationality; salutation; title.
• Contact details: correspondence address; telephone number; email address; details of Personal Assistants, where applicable.
• Applicant details: bio; research expertise; publication record; academic background; country of research institute.
• Data relating to our Website: device type; operating system; browser type; browser settings; IP address; language settings; dates and times of connecting to our Website; username; password; security login details; usage data; aggregate statistical information.
• Employer details: where you interact with us in your capacity as an employee of a third party, the name, address, telephone number and email address of your employer, to the extent relevant.
• Views and opinions: any views and opinions that you choose to send to us, or publicly post about us on social media platforms.

(E) Purposes of Processing and legal bases for Processing

(F) Disclosure of Personal Data to third parties

We disclose Personal Data to other entities within the Leducq organization, for legitimate business purposes and the operation of our Website or services to you, in accordance with applicable law. In addition, we disclose Personal Data to:

• you and, where appropriate, our Scientific Advisory Committee, our network reviewers, our patrons, your coordinator, network (including scientists and institutional representatives) or research institute;
• legal and regulatory authorities, upon request, or for the purposes of reporting any actual or suspected breach of applicable law or regulation;
• accountants, auditors, lawyers and other outside professional advisors to the Leducq organization, subject to binding contractual obligations of confidentiality;
• third party Processors (such as payment services providers for grants; etc.), located anywhere in the world, subject to the requirements noted below in this Section (F);
• any relevant party, law enforcement agency or court, to the extent necessary for the establishment, exercise or defence of legal rights;
• any relevant party for the purposes of prevention, investigation, detection or prosecution of criminal offences or the execution of criminal penalties;
• any relevant third-party provider, including MailChimp, Constant Contact and the like, where our Website use third party advertising, plugins or content. If you choose to interact with any such advertising, plugins or content, your Personal Data may be shared with the relevant third-party provider. We recommend that you review that third party’s privacy policy before interacting with its advertising, plugins or content.

If we engage a third-party Processor to Process your Personal Data, the Processor will be subject to binding contractual obligations to: (i) only Process the Personal Data in accordance with our prior written instructions; and (ii) use measures to protect the confidentiality and security of the Personal Data; together with any additional requirements under applicable law.

(G) International transfer of Personal Data

(H) Data security

We have implemented appropriate technical and organisational security measures designed to protect your Personal Data against accidental or unlawful destruction, loss, alteration, unauthorised disclosure, unauthorised access, and other unlawful or unauthorised forms of Processing, in accordance with applicable law.

Because the internet is an open system, the transmission of information via the internet is not completely secure. Although we will implement all reasonable measures to protect your Personal Data, we cannot guarantee the security of your data transmitted to us using the internet – any such transmission is at your own risk and you are responsible for ensuring that any Personal Data that you send to us are sent securely.

(I) Data accuracy

We take every reasonable step to ensure that:

• your Personal Data that we Process are accurate and, where necessary, kept up to date; and
• any of your Personal Data that we Process that are inaccurate (having regard to the purposes for which they are Processed) are erased or rectified without delay.

From time to time we may ask you to confirm the accuracy of your Personal Data.

(J) Data minimisation

We take every reasonable step to ensure that your Personal Data that we Process are limited to the Personal Data reasonably necessary in connection with the purposes set out in this Notice.

(K) Data retention

We take every reasonable step to ensure that your Personal Data are only Processed for the minimum period necessary for the purposes set out in this Notice. The criteria for determining the duration for which we will retain your Personal Data are as follows:

(1) we will retain Personal Data in a form that permits identification only for as long as:

(a) we maintain an ongoing relationship with you (e.g., where you are an applicant or a grant-holder; user of our services, or you are lawfully included in our mailing list and have not unsubscribed); or

(b) your Personal Data are necessary in connection with the lawful purposes set out in this Notice, for which we have a valid legal basis (e.g., where your personal data are included in an agreement and we have a legitimate interest in processing those data for the purposes of operating our mission and fulfilling our obligations under that agreement; or where we have a legal obligation to retain your Personal Data),

plus:

(2) the duration of:

(a) any applicable limitation period under applicable law (i.e., any period during which any person could bring a legal claim against us in connection with your Personal Data, or to which your Personal Data are relevant); and

(b) an additional two (2) month period following the end of such applicable limitation period (so that, if a person brings a claim at the end of the limitation period, we are still afforded a reasonable amount of time in which to identify any Personal Data that are relevant to that claim),

and:

(3) in addition, if any relevant legal claims are brought, we continue to Process Personal Data for such additional periods as are necessary in connection with that claim.

During the periods noted in paragraphs (2)(a) and (2)(b) above, we will restrict our Processing of your Personal Data to storage of, and maintaining the security of, those data, except to the extent that those data need to be reviewed in connection with any legal claim, or any obligation under applicable law.

Once the periods in paragraphs (1), (2) and (3) above, each to the extent applicable, have concluded, we will either:

• permanently delete or destroy the relevant Personal Data; or
• anonymize the relevant Personal Data.

(L) Your legal rights

Subject to applicable law, you may have the following rights regarding the Processing of your Relevant Personal Data:

• the right not to provide your Personal Data to us (however, please note that we will be unable to provide you with the full benefit of our Website or services, if you do not provide us with your Personal Data – e.g., we might not be able to process your requests without the necessary details or consider your application to a grant);
• the right to request access to, or copies of, your Relevant Personal Data, together with information regarding the nature, Processing and disclosure of those Relevant Personal Data;
• the right to request rectification of any inaccuracies in your Relevant Personal Data;
• the right to request, on legitimate grounds:
  • erasure of your Relevant Personal Data; or
  • restriction of Processing of your Relevant Personal Data;
• the right to have certain Relevant Personal Data transferred to another Controller, in a structured, commonly used and machine-readable format, to the extent applicable;
• where we Process your Relevant Personal Data on the basis of your consent, the right to withdraw that consent (noting that such withdrawal does not affect the lawfulness of any Processing performed prior to the date on which we receive notice of such withdrawal, and does not prevent the Processing of your Personal Data in reliance upon any other available legal bases); and
• the right to lodge complaints regarding the Processing of your Relevant Personal Data with a Data Protection Authority (in particular, the Data Protection Authority of the EU Member State in which you live, or in which you work, or in which the alleged infringement occurred, each if applicable).

Subject to applicable law, you may also have the following additional rights regarding the Processing of your Relevant Personal Data:

• the right to object, on grounds relating to your particular situation, to the Processing of your Relevant Personal Data by us or on our behalf; and
• the right to object to the Processing of your Relevant Personal Data by us or on our behalf for direct marketing purposes.

This does not affect your statutory rights.

To exercise one or more of these rights, or to ask a question about these rights or any other provision of this Notice, or about our Processing of your Personal Data, please use the contact details provided in Section (N) below. Please note that:

• in some cases it will be necessary to provide evidence of your identity before we can give effect to these rights; and
• where your request requires the establishment of additional facts (e.g., a determination of whether any Processing is non-compliant with applicable law) we will investigate your request reasonably promptly, before deciding what action to take.

If you want to exercise your rights, please see Section (N) for our contact details.

(M) Cookies and similar technologies

When you visit our Website we will typically place Cookies onto your device, or read Cookies already on your device, subject always to obtaining your consent, where required, in accordance with applicable law. We use Cookies to record information about your device, your browser and, in some cases, your preferences and browsing habits. We Process Personal Data through Cookies and similar technologies, in accordance with existing legislation.

(N) Details of Controllers

When you visit our Website we will typically place Cookies onto your device, or read Cookies already on your device, subject always to obtaining your consent, where required, in accordance with applicable law. We use Cookies to record information about your device, your browser and, in some cases, your preferences and browsing habits. We Process Personal Data through Cookies and similar technologies, in accordance with existing legislation.

(O) Definitions

• “Adequate Jurisdiction” means a jurisdiction that has been formally designated by the European Commission as providing an adequate level of protection for Personal Data.
• “Cookie” means a small file that is placed on your device when you visit a website (including our Website). In this Notice, a reference to a “Cookie” includes analogous technologies such as web beacons and clear GIFs.
• “Controller” means the entity that decides how and why Personal Data are Processed. In many jurisdictions, the Controller has primary responsibility for complying with applicable data protection laws.
• “Data Protection Authority” means an independent public authority that is legally tasked with overseeing compliance with applicable data protection laws.
• “EEA” means the European Economic Area.
• “Personal Data” means information that is about any individual, or from which any individual is directly or indirectly identifiable, in particular by reference to an identifier such as a name, an identification number, location data, an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that individual.
• “Process”, “Processing” or “Processed” means anything that is done with any Personal Data, whether or not by automated means, such as collection, recording, organisation, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, restriction, erasure or destruction.
• “Processor” means any person or entity that Processes Personal Data on behalf of the Controller (other than employees of the Controller).
• “Profiling” means any form of automated Processing of Personal Data consisting of the use of Personal Data to evaluate certain personal aspects relating to a natural person, in particular to analyse or predict aspects concerning that natural person’s performance at work, economic situation, health, personal preferences, interests, reliability, behaviour, location or movements.
• “Relevant Personal Data” means Personal Data in respect of which we are the Controller.
• “Sensitive Personal Data” means Personal Data about race or ethnicity, political opinions, religious or philosophical beliefs, trade union membership, physical or mental health, sexual life, any actual or alleged criminal offences or penalties, national identification number, or any other information that are deemed to be sensitive under applicable law.
• “Standard Contractual Clauses” means template transfer clauses adopted by the European Commission or adopted by a Data Protection Authority and approved by the European Commission.
• “Website” means the website operated, or maintained, by us or on our behalf.