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privacy policy


Faced with the development of new communication tools, it is necessary to pay particular attention to the protection of privacy. That is why we are committed to respecting the confidentiality of the personal information we collect.

Collection of personal information

We collect the following information:

  • Last name

  • First name

  • Address

  • Postal code

  • email address

  • Telephone / fax number

  • First name of children

The personal information we collect is collected through forms and through the interactivity established between you and our website. We also use, as described in the following section, cookies and / or logs to collect information about you.

Forms and interactivity

Your personal information is collected through forms, namely:

  • Website registration form

  • Form on the registration page hosted by Helloasso

  • Opinion polls

We use the information thus collected for the following purposes:

  • Information

  • Statistics

  • Contacts

Your information is also collected through the interactivity that can be established between you and our website, as follows:

  • Statistics

  • Contacts

We use the information thus collected for the following purposes:

  • Matches

  • Information

Sharing of Personal Information

We agree not to market the personal information collected. However, we sometimes share this information with third parties for the following reasons:

  • Statistical data for research on Koolen de Vries syndrome

  • Partnership

  • To our partner the Valentin Apac Association as part of the double membership.

If you do not want your personal information to be disclosed to third parties, you can object to it at the time of collection or at any time thereafter, as mentioned in the following section.

Right of opposition and withdrawal

We are committed to offering you a right of objection and withdrawal regarding your personal information.
The right of opposition is understood as being the possibility offered to Internet users to refuse that their personal information be used for certain purposes mentioned during the collection.

The right of withdrawal is understood to be the possibility offered to Internet users to request that their personal information no longer appear, for example, in a distribution list.

To exercise these rights, you can contact us via one of these means:

Permission to access

We undertake to recognize a right of access and rectification to the persons concerned wishing to consult, modify, or even delete information concerning them via one of the following means:


The personal information we collect is kept in a secure environment. People working for us are required to respect the confidentiality of your information.
To ensure the security of your personal information, we use the following measures:

  • SSL (Secure Sockets Layer) protocol

  • Access management - authorized person

  • Computer backup

  • Login password

We are committed to maintaining a high degree of confidentiality by incorporating the latest technological innovations to ensure the confidentiality of your transactions. However, since no mechanism offers maximum security, there is always a risk involved when using the Internet to transmit personal information.


We agree to comply with the legislative provisions set out in the GDPR

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