Legal notice


Horizon 21 web site editor

Institut Jérôme Lejeune, association déclarée
37 rue des Volontaires 
75725 PARIS CEDEX 15
Phone : 01 56 58 63 00 
Mail :


Director of publication

Grégoire François-Dainville, Institut Jérôme Lejeune



140 quai du Sartel – F-59 100 ROUBAIX
Tél. : +33 8 99 70 17 61
Email :


Design and technical integration

67 rue de l’Oisillonnette
49300 CHOLET
Email :



To be added (check with lawyer): governing law; location of the Court of Justice


Intellectual property :

To be completed (check with lawyer)


Protection of your personal data


What is the definition of a personal data?

A personal data is an information relating to you, directly identifying you, such as your name, or allowing to indirectly identify you, such as the IP address of your computer.


Who is responsible for the personal data collected on this website?

The Jérôme Lejeune Institute, one of the members of the Horizon 21 Consortium, is the data controller of this web site, and therefore is responsible for the protection of your personal data, collected when you are using and navigating this web site.


Is this legitimate for us to collect and use your personal data?

As an organization having a part of its mission dedicated to the scientific research on Down Syndrome, and as a member of the Horizon 21 Consortium, we have a legitimate interest in establishing a communication with the public who wants to learn about our projects. We remain however always committed to respecting your rights and freedoms which require protection of your personal data according to the applicable laws and regulations, including the Regulation (EU) 2016/679 of the European Parliament and of the Council of 27th April 2016, known as GDPR (the General Data Protection Regulation).


What personal data do we collect and use, and for which purpose?

Most of this web site services do not require any form of registration, allowing you to visit our site without telling us who you are. However, if you use the “Contact” form, you will be asked to voluntarily provide us with personal data, including your name and email address, and, as a non-mandatory option, your company as well as any personal information that you decide to include into your contact message to us. We will collect and use this personal data only to communicate with you and inform you about the Horizon 21 projects.


Will cookies be sent to your browser when connecting to this web site?

A « cookie » is a small piece of information, which is sent to your browser and stored on your computer’s hard drive. Cookies allows us to collect and process information about your visit to this web site, such as the pages you visit. We may use such information to help improve the contents of the site and aggregate numbers about people using our site for our internal audience statistics.

The information collected by the cookies are: your anonymized IP address, your internet service provider, your operating system, and the date and time of access.


To whom do we disclose your personal data? In which location?

 Your personal data is disclosed and used only by the staff of the Horizon 21 Consortium working on the Horizon 21 projects, and by the technical staff or our authorized contractor’s staff in charge of the administration of the web site.

Your personal data is disclosed only for the following purposes: evaluation of the usefulness and audience of this web site, technical support to this web site, communication with the persons sending their contact information via the “Contact” form.

The persons to which your personal data is disclosed are located within the European Economic Area or in the United Kingdom. They benefit in these locations either from the level of protection of the GDPR or from the UK GDPR.


How long do we store your data?

 We will only retain your data for as long as necessary to fulfil the purpose for which they were collected, therefore for the duration of the Horizon 21 Consortium, or to comply with legal or regulatory requirements.


What are your rights and how can you exercise them?

We take reasonable steps to keep your Personal Data accurate and up to date for the purposes for which they were collected.

You have the ability, under the conditions and within the limits set forth by the law, to exercise the following rights:

  • Request additional information about the processing of your personal data
  • Object to the processing of your personal data
  • Ask us to restrict the processing of your personal data only to its storage
  • Access your personal data processed by us
  • Ask for correction or erasure of your personal data
  • Request portability, where applicable according to the law, of your personal data

To do so, please contact us at the following email address:


If you consider that your rights are not respected, you have also the right to lodge a complaint with the data protection supervisory authority from the country where you are established (if you are in the European Union). If you are in France, or outside the European Union, your complaint can be lodged at the “Commission Nationale de l’Informatique et des Libertés (CNIL), 3 place Fontenoy – TSA 80715 – 75334 Paris cedex 07, phone number: +33 (0)1 53 73 22 22, web site: »