Privacy policy

The European Organisation for Rare Diseases, a non-governmental organization, with its registered office at Plateforme Maladies Rares, rue Didot 96, 75014 Paris and registered in France under the company number 413 459 066 000 36 ("Eurordis", "We", "Us" or "Our") is committed to protecting and respecting your privacy.

We protect your privacy and always act in accordance with the provisions of the French Privacy Act (Act N° 78-17 of 6 January 1978 on Information Technology, Data Files and Civil Liberties as amended by Act of 6 August 2004 relative to the protection of individuals with regard to the processing of personal data) and ensure confidentiality and safety of your personal data.

1. SCOPE OF POLICY

This policy (together with the Conditions of Use as set out at ("Conditions of Use") and the Cookie Policy as set out at, apply to the website www.rarediseaseday.org ("Website").

This policy sets out the basis on which any personal data We collect from you, or that you provide to Us, will be processed by Us. Please read the following carefully to understand Our views and practices regarding your personal data and how We will treat it.

By using the Website and/or entering your personal data, you explicitly agree to the conditions for the collection, processing and disclosure of personal data by Us as defined below. If you do not agree to any of the contents of the Privacy Policy, please stop the use of the Website immediately. If you submit personal data of other individuals to Us through the Website, you represent and guarantee that the present conditions have been made available to these other individuals and that these individuals have accepted them.

The Website may contain links to and from the websites of Our partner networks and affiliates. If you follow a link to any of these websites, please note that these websites and any services that may be accessible through them have their own privacy policies and that We do not accept any responsibility or liability for these policies or for any personal data that may be collected through these websites or services, such as contact and location data. Please check these policies before you submit any personal data to these websites or use these services.

2. INFORMATION WE MAY COLLECT FROM YOU

We may collect and process the following data about you:

Submitted information: You may give Us information about you when you register to the Website (for example, via the un-subscription to the latest Rare Disease Day news or via the page To Become A Friend), when you upload materials (e.g. texts, programs, photos and images) to the Website, when you upload events to the Website, when you correspond with Us (for example by e-mail) or when you report a problem with the Website. The information you give Us may include your first name, last name, e-mail address, phone number, related rare disease(s), name of your organisation, password and other registration information and any comments and/or materials (e.g. texts, programs, photos and images) you may have shared.

Information We collect about you: Each time you use the Website, We may automatically collect some basic information of your use of the Website, including, but not limited to, traffic data (for example, information as the location from which the traffic originates and which particular pages within the Website are being viewed and for how long), weblogs and other communication data, IP addresses, details on your last log-in, details on the number and date of wrong password entries, details on password modifications and the resources that you access.

3. USES MADE OF THE INFORMATION

We may use the information, including your personal information:

  • to provide, personalise and improve the functioning of the Website made available;
  • to secure the Website and prevent other Users from accessing your information and the materials that you submitted to the Website;
  • to communicate with you for purposes related to the Website;
  • to prevent and detect any misuse of the Website and/or fraud;
  • to administer the Website for internal operations, including troubleshooting, data analysis, testing, research, statistical and survey purposes; and
  • to enforce the Conditions of Use and this Privacy Policy.

For the avoidance of doubt, you agree and acknowledge that we may use materials and events uploaded to the Website by you for the purposes set out in the Terms of Use (notably for communication and fundraising purposes).

4. DISCLOSURE OF YOUR INFORMATION

We will not disclose your personal information to any other entity or organisation without your prior consent.

Third parties may only have access to your personal information:

  • If We are under a duty to disclose or share your personal data in order to comply with any legal or regulatory obligation (for example in the context of judicial investigations) or information request (for example from a competent authority)
  • In order to (i) enforce or apply the Conditions of Use or to investigate potential breaches, or (ii) to protect the rights, property or safety of Us, Our Users, or others. This includes exchanging information with other companies and organisations for the purposes of fraud protection and risk reduction.

However, as set out in the Cookie Policy, cookies to support the use of Google Analytics and Facebook’s Social Plugin have been installed on Our website. Those cookies may transfer collected information about you to respectively Google and Facebook. More information on how Google and Facebook collect and process data can be found on the pages referred to in the Cookie Policy.

5. YOUR MATERIALS

We ensure confidentiality and safety of the materials that you submit to the Website ("Your Materials").

This Website has in particular security measures in place to protect the loss, misuse and alteration of the information under Our control. Security is the responsibility of Our hosting company. We have a contract with that company to ensure that personal data is protected by passwords, firewalls and other security measures.

WHERE WE STORE YOUR PERSONAL DATA

We will take all steps reasonably necessary to ensure that your personal information is treated securely within the European Economic Area and in accordance with this Privacy Policy.

6.YOUR RIGHTS

You have the right to access and consult your personal data next to the right to correct, modify and update these personal data.

You can exercise these rights at any time by contacting Us at Eurordis, Rue Didot 96, 75014 Paris, France or [email protected]

7. COOKIES

We use cookies to distinguish you from other Users of the Website. This helps Us to provide you with a good experience when you use the Website and also allows Us to improve the Website. For detailed information on the cookies We use and the purposes for which We use them, see Our Cookie Policy.

8. CHANGES TO PRIVACY POLICY

Any changes We may make to Our Privacy Policy in the future will be posted on this page. Please always verify whether you have consulted the latest version of the Privacy Policy. Your continued use of Our Website constitutes your agreement to this Privacy Policy and any updates.

This Privacy Policy was last modified and revised on January 2016.

9. CONTACT

Questions, comments and requests regarding this Privacy Policy are welcomed and should be addressed to Eurordis at Rue Didot 96, 75014 Paris, France [email protected]

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