Privacy Policy
Fondation Jérôme Lejeune is concerned about your personal data protection. As data controller, we take care to ensure the highest level of protection and confidentiality of this collected data as part of our research mission. Fondation Jérôme Lejeune is committed to complying with the General Data Protection Regulation (GDPR) and the French Data Protection Law (Loi Informatique et Libertés n°78-17 du 6 janvier 1978 modifiée – LIL).
Personal data means any information relating to an identified or identifiable natural person (“data subject”).
Personal data are collected when you connect to Fondation Jérôme Lejeune’s research platform (https://funding.fondationlejeune.org/login), at scientific conferences, in the public space or when you communicate with us. This information is processed on paper or by computer.
Please find below information on how we handle this data. This page is regularly updated.
Fondation Jérôme Lejeune (headquartered at 31 rue Galande 75005 Paris and operating at 37 rue des Volontaires 75015 Paris) is responsible for data processing as Data Controller.
The data collected by Fondation Jérôme Lejeune are necessary to enable us to fulfil the following purposes:
- Fund research programs:
- Postdoctoral fellowships (in connection with Down syndrome and associated pathologies)
- Spring call for projects (Grants 202Xa) (in connection with Down syndrome and other genetic intellectual deficiencies appearing in early childhood)
- Autumn call for projects (Grants 202Xb) (exclusively dedicated to Down syndrome)
- Jérôme Lejeune Young Researchers Award
- Jérôme Lejeune 4th-year PhD Scholarship
– Promote collaboration between researchers (networking of researchers and clinicians working on Down syndrome, organization of scientific events, setting up of research partnerships)
– Coordinate meetings of the Scientific Advisory Board
Fondation Jérôme Lejeune does not process any data for purposes incompatible with those for which it was collected, except with your prior consent.
Fondation Jérôme Lejeune process your personal data only when there is a legal basis for its collection and processing.
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Purposes |
Lawfulness of processing |
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Fund research programs
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– Processing is necessary for the performance of a contract to which the data subject is party or in order to take steps at the request of the data subject prior to entering into a contract – Processing is necessary for compliance with a legal obligation to which the Fondation Jérôme Lejeune is subject – Processing is necessary for the purposes of the legitimate interests pursued by Fondation Jérôme Lejeune in accordance with its statutory research missions |
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Promote collaboration between researchers |
– Processing is necessary for the performance of a contract to which the data subject is party or in order to take steps at the request of the data subject prior to entering into a contract – Processing is necessary for compliance with a legal obligation to which the Fondation Jérôme Lejeune is subject – Processing is necessary for the purposes of the legitimate interests pursued by Fondation Jérôme Lejeune in accordance with its statutory research missions |
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Coordinate meetings of the Scientific Advisory Board
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– Processing is necessary for the performance of a contract to which the data subject is party or in order to take steps at the request of the data subject prior to entering into a contract – Processing is necessary for compliance with a legal obligation to which the Fondation Jérôme Lejeune is subject – Processing is necessary for the purposes of the legitimate interests pursued by Fondation Jérôme Lejeune in accordance with its statutory research missions |
Fondation Jérôme Lejeune collects different types of personal data depending on the purposes for which they are processed.
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Purposes |
Data collected |
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Fund research programs
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– Information directly provided by researchers and clinicians applying for a call for projects (Grant) o Identification information o Curriculum vitae o Contact information o Professional life o Structure of affiliation – Information related to the structures/institutions to which researchers and clinicians belong o Identification information from managers and staff in charge of financial agreements o Contact information from managers and staff in charge of financial agreements o Bank account details (RIB) o Data related to the research project – Information related to members of the Scientific Advisory Board and external rapporteurs o Manager’s identification information o Contact information – Historical data related to researchers and clinicians applying for a call for projects or working on a project funded by Fondation Jérôme Lejeune – Connection information to the Grant application software – Correspondence between researchers and clinicians applying for a Grant and Fondation Jérôme Lejeune |
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Promote collaboration between researchers |
– Information directly provided by researchers and clinicians o Identification information o Curriculum vitae o Contact information o Professional life o Structure of affiliation – Information related to the structures/institutions researchers and clinicians belong to o Identification information from managers and staff in charge of financial agreements o Contact information from managers and staff in charge of financial agreements o Bank account details (RIB) o Data related to the research project – Information related to experts in charge of project evaluation o Identification information o Contact information – Correspondence between researchers and clinicians and Fondation Jérôme Lejeune |
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Coordinate meetings of the Scientific Advisory Board
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– Information related to Scientific Advisory Board o Identification information o Contact information o Photos taken during meetings o Date of birth o SNCF loyalty card o Professional life o Structure of affiliation o Bank account details (RIB) o Dates and place of Scientific Advisory Board meetings – Information related to the structures/institutions to which researchers and clinicians belong o Identification information o Contact information o Data related to the research project o Professional life o Structure of affiliation |
Data are mainly collected on Fondation Jérôme Lejeune’s research platform (https://funding.fondationlejeune.org/login) and during your exchanges (by e-mail, telephone, at scientific congresses) with Fondation Jérôme Lejeune’s research department. Some data are also collected when you fill in online forms to take part in scientific events or when you send us your expense claims.
Some data may also come from the public domain, in particular from bibliographic data search engines covering all areas of specialization in biology and medicine (e.g. PubMed).
Data are kept by Fondation Jérôme Lejeune for no longer than it is necessary for the purposes for which they are processed.
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Purposes |
Duration of the processing of personal data |
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Fund research programs
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Data are kept for the duration of the research program. They are then kept for statistical purposes (indicators of the number of applications per researcher/clinician – history of research carried out by a researcher/clinician) |
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Promote collaboration between researchers |
Data is kept for the duration of the research program. They are then kept for statistical purposes (indicators of the number of applications per researcher/clinician – history of research carried out by a researcher/clinician). |
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Coordinate meetings of the Scientific Advisory Board
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Members of the Scientific Advisory Board’s data are kept for the duration of their mandate. |
Fondation Jérôme Lejeune implements all technical, physical and organizational measures to ensure the security and confidentiality of your data when collecting, processing and sharing your data against the risks of illegitimate access, unwanted modification or loss of your data.
Fondation Jérôme Lejeune infrastructures are protected against malicious software. Physical and remote access to servers hosting data is controlled. Intrusion tests are carried out, as well as regular backups and restoration tests. The security of your terminal, from which you connect to Fondation Jérôme Lejeune’s research site, is your responsibility.
In the event that Fondation Jérôme Lejeune calls upon service providers to process part of your data, it undertakes to verify that they present sufficient guarantees to ensure the protection of the personal data entrusted to them in accordance with data protection regulation.
Right to access your personal data
You may obtain from Fondation Jérôme Lejeune confirmation as to whether or not your personnal data are being processed and, where your data are being processed, access to all data and information held by Fondation Jérôme Lejeune.
Right to rectification of your personal data
You can obtain from Fondation Jérôme Lejeune, without undue delay, the rectification of your data which would be inaccurate or erroneous. You can also have the right to have incomplete personal data completed.
Right to erasure of your personal data
Except in the case of applicable legal obligations, you may ask Fondation Jérôme Lejeune to delete your personal data if, in particular, you consider that the processing carried out by Fondation Jérôme Lejeune on these data is no longer necessary with regard to the purposes for which they were collected.
Right to object to processing of personal data
You may object to the processing of your personal data. In this case, you must give reasons relating to your particular situation.
Right to restriction of processing
You may ask Fondation Jérôme Lejeune to temporarily restrict the processing of some of your data in one of the following cases:
- you contest the accuracy of the data used by Fondation Jérôme Lejeune,
- you object processing of your personal data,
- in the event of unlawful processing, but you object to their erasure,
- you required it for the establishment, exercise or defence of legal claims.
The right to give post-mortem instructions
You have the possibility of defining directives relating to the storage, erasure and communication of your data after your death. These directives define the way in which you wish your rights to your data to be exercised after your death. You can send us these directives by sending a letter to Fondation Jérôme Lejeune’s DPO, mentioning “Post-mortem directives” in the subject line. You may modify or revoke your directives at any time.
The right to lodge a complaint with a supervisory authority
If you consider that your rights are not respected or that the protection of your personal data is not ensured in accordance with the GPDR, you may, at any time, lodge a complaint with a competent supervisory authority. The list of supervisory authorities can be found on the European Data Protection Supervisor’s website https://edpb.europa.eu/about-edpb/about-edpb/members_en.
Exercising your rights
To exercise your rights, please send your request to: dpo@fondationlejeune.org or by post to: Data Protection Officer – Fondation Jérôme Lejeune, 37 rue des Volontaires, 75015 Paris, France.
All requests must specify, in the subject line, the reason for the request (exercise of the right of access, object, etc.). The request must also be accompanied by proof of identity and specify the address to which the reply should be sent.
Fondation Jérôme Lejeune will reply within a maximum of one (1) month from the date of receipt of your request. However, this deadline may be extended by two (2) months due to the complexity and number of requests.
In general, if you have any questions about this privacy policy or any request relating management of your personal data by Fondation Jérôme Lejeune, you can send your request by email or by post, as indicated above.
Fondation Jérôme Lejeune may transmit your personal data to the following recipients:
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Purposes |
Recipients |
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Fund research programs
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– The research, legal, finance, general management and IT departments of Fondation Jérôme Lejeune, according to their respective needs – Institut Jérôme Lejeune’s research director, general management and clinicians (members of the Scientific Advisory Board and occasional medical and scientific experts on projects) – Members of the Scientific Advisory Board and external rapporteurs – The managers and contract officers of the affiliated structures |
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Promote collaboration between researchers |
– The research, legal, finance, general management and IT departments of Fondation Jérôme Lejeune, according to their respective needs – Institut Jérôme Lejeune’s research director, general management and clinicians (members of the Scientific Advisory Board and occasional medical and scientific experts on projects) – Experts in charge of project evaluation – The managers and contract officers of the affiliated structures |
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Coordinate meetings of the Scientific Advisory Board
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– The research, legal, finance, general management and IT departments of Fondation Jérôme Lejeune, according to their respective needs – Institut Jérôme Lejeune’s research director, general management and clinicians (members of the Scientific Advisory Board and occasional medical and scientific experts on projects) – Experts in charge of project evaluation – The managers and contract officers of the affiliated structures |
Your data are hosted on secure servers in France. As far as our processors are concerned, data are usually hosted within the European Economic Area (EEA).
However, some data processed by our processors may be transferred outside the EEA due to their international presence, in accordance with their privacy policy. Fondation Jérôme Lejeune takes particular care to ensure that these organizations process personal data in strict compliance with current data protection regulations. In the event that the latter are located in a country that is not the subject of an adequacy decision by the European Commission, recognizing a level of protection equivalent to that provided by the European Union, a standard contract will be drawn up in order to comply with the model established and approved by the European Commission (Standard Contractual Clauses) accompanied by additional security measures. In this case, you have the right to access the documents authorizing the transfer.
Data may also be transferred when the applicant is based outside the European Union.