PRIVACY POLICY

 

This document constitutes the privacy policy (hereinafter the "Policy") of this website (hereinafter the "Website"). It informs Internet users visiting the Website (hereinafter referred to as "Internet users") of the conditions under which personal data concerning them is processed and collected through the Website by the Foundation For Rare Diseases (hereinafter referred to as the "Fondation Maladie Rares"), whose head office is located at 96 rue Didot in Paris (75014, FRANCE).

Who is responsible for the processing of data concerning Internet users?

The Foundation For Rare Diseases is responsible for the processing of data concerning Internet users. The representative of the Foundation For Rare Diseases is Pr. Daniel Scherman.

How to contact the Foundation For Rare Diseases for questions and requests related to data protection?

The Foundation For Rare Diseases invites Internet users to contact it at the following e-mail address: contact[at]fondation-maladiesrares.com

What does the Foundation For Rare Diseases do as a data processing company for Internet users?

Through the Site, the Foundation For Rare Diseases implements the following processing of data concerning Internet users (hereafter the "Processing"):

The collection by form of email address of the Internet users to register them to its mailing list of its newsletters relating to its activities and news

Management of online donations made by Internet users to the Rare Diseases Foundation

Why does the Foundation For Rare Diseases implement these Treatments?

The Foundation For Rare Diseases processes the Data of Internet users for the purposes (hereinafter "Purposes") which are detailed below:

The Foundation For Rare Diseases collects the email addresses of Internet users via the subscription form in order to send them a newsletter concerning its activities and news in order to communicate on these subjects

The Foundation For Rare Diseases manages the online donations made by Internet users to its benefit in order to collect the amounts of these donations and send tax receipts to donors

In general, the Foundation For Rare Diseases processes users' data as part of the management of any requests made by Internet users concerning the exercise of their individual rights in terms of personal data protection.

On what legal basis does the Foundation For Rare Diseases base the implementation of the Treatment?

The Foundation For Rare Diseases relies on the consent of Internet users to collect their email address via the subscription form in order to send them a newsletter concerning its activities and news in order to communicate on these subjects. The Foundation For Rare Diseases manages online donations made by Internet users for its own benefit in order to collect the amounts of these donations and send tax receipts to donors, based on its legitimate interest in collecting donations to pursue its statutory purpose, which is to help fund research into treatments for rare diseases. It is on the basis of the legal obligations resulting from Chapter 3 of the General Data Protection Regulation that the Foundation For Rare Diseases processes users' data in the context of managing any requests from Internet users concerning the exercise of their individual rights in terms of personal data protection. To revoke the consent given for the receipt of newsletters from the Foundation For Rare Diseases, Internet users may use the "unsubscribe" or "unsubscribe" button located at the bottom of each email received in this regard.

What data about Internet users does the Foundation For Rare Diseases collect on the Site?

The personal data concerning Internet users collected by the Foundation For Rare Diseases after their registration on the mailing list to receive newsletters are the following:

  • E-mail address of the Internet users
  • Consent of Internet users to receive newsletters by e-mail

The personal data concerning the Internet users and which are collected within the framework of the management of the on-line donations carried out by the Internet users in its profit in order to be able to collect the amounts of these donations and to send the tax receipts to the donors are the following ones:

  • First name
  • Name
  • Corporate name of the organization represented by the Internet users (optional)
  • Country of tax residence
  • Address of tax domicile
  • Postal code of the place of tax residence
  • City where the tax residence is located
  • Telephone number (optional)
  • Email address of the Internet user
  • Acceptance of the privacy policy of the Foundation For Rare Diseases website
  • The amount of the donation
  • The number of the payment card used to make the donation
  • The verification code of the payment card used to make the donation (CVC)
  • Expiry date of the payment card used to make the donation

The data processed for the treatment of requests to exercise the rights of Internet users regarding their personal data are :

  • A document proving the identity of the applicant
  • The other data mentioned above, except for the card number, its expiration date and its CVC

Except for the Foundation For Rare Diseases, who else can access the personal data of Internet users?

The Foundation For Rare Diseases calls upon subcontractors and co-managers for the implementation of the Processing. OVH, SAS, domiciled at 2 rue Kellerman, is the host of the Site and of the data that passes through it. Personal data concerning Internet users processed via the services of OVH are transmitted to servers located in France. The data collected in the context of the registration of Internet users to the mailing list to receive the newsletters of the Foundation For Rare Diseases are processed by means of the Mailjet solution, published by the company Mailgun, whose head office is located at 112 E Pecan St. #1135, San Antonio, TX 78205. Mailjet customer data is stored in data centers owned by Google Cloud and located in the European Union, in the cities of Frankfurt (Germany) and St. Ghislain (Belgium). Standard contractual clauses ensure the adequacy of the level of data protection when Mailgun has to transfer the data to the United States of America. A specific agreement on data protection has been signed between the Foundation For Rare Diseases and Mailgun, which can be consulted at this address: https://www.mailjet.com/dpa/ The data collected within the framework of the management of donations made online through the Foundation For Rare Diseases website are transmitted to the CIC bank, whose head office is located at 6 AV DE PROVENCE 75009 PARIS, via its Monetico payment module, whose data are hosted by Euro-Information, a simplified joint-stock company with a capital of €53,212,140, whose head office is located at 4, rue Frédéric-Guillaume Raiffeisen - 67000 Strasbourg.

How long does the Foundation For Rare Diseases keep the personal data of Internet users?

The length of time the Internet user's Data is kept varies according to the Processing carried out. The data processed as part of the registration of Internet users to the mailing list to receive newsletters are kept since the collection of consent of the persons concerned until its withdrawal by them. The data processed in the context of the management of online donations made by Internet users for the purpose of collecting the amounts of these donations and sending tax receipts to donors are kept for 10 years from the date of the donation. However, the data that are useful only for the realization of the online payment by card, i.e. the number of the payment card, its expiration date and its CVC, are not kept beyond the realization of the payment. The personal data requested for the processing of requests to exercise rights are kept for 1 year from the date of the request.

What are the rights of Internet users?

The Foundation For Rare Diseases informs each Internet user that he or she has the individual right to request access to personal data concerning him or her, the rectification or deletion of such data, or a limitation of the Processing carried out on the Internet user's Data relating to the person concerned, or the right to object to the Processing and the right to data portability. The exercise of these rights by Internet users is possible by contacting the Foundation For Rare Diseases by :

  • Email to the following address: contact[at]fondation-maladiesrares.com
  • By post by sending a letter to the following address Foundation For Rare Diseases, Plateforme Maladies Rares, 96 rue Didot, 75014 PARIS

Internet users have the individual right to lodge a complaint with the CNIL concerning a dispute arising between them and the Foundation For Rare Diseases and which concerns one of the Treatments. Effective date of the policy: October 1, 2021