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Terms & Conditions

The present Conditions of Use (together with the Privacy Policy and the Cookie Policy govern your use of the website (“Website”). Use of Our Website includes accessing and browsing our Website.
The Website is operated by European Organisation for Rare Diseases, a non-governmental organization, with its registered office at Plateforme des 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”).

Please read the Conditions of Use, the Privacy Policy and the Cookie Policy carefully before you start using Our Website in any way.
By using Our Website, you expressly acknowledge your acceptance of the Conditions of Use, the Privacy Policy and the Cookie Policy. If you do not agree to any of the content of the Conditions of Use, the Privacy Policy and the Cookie Policy, please stop the use of the Website immediately.

1. Purpose of our website

The Website provides information, data and materials about rare diseases and orphan drugs (together “Materials”) and enables interaction with Eurordis and the internet users who choose to access the Website (“Users”). The Website also allows Users to make donations in order to empower the European rare disease community.

2. Accessing our website

The Website and the Materials may be adjusted, modified or completed at any time and without prior announcement or notice. We gives no guarantees regarding the function or availability of the Website and the Materials and cannot be held responsible for any malfunctions or temporary (un)availability or for any direct or indirect damage that may arise from your access to or your use of the Website and the Materials.
You are responsible for making all arrangements necessary for you to have access to Our Website.

3. Liability

To the extent permitted by French law, We exclude all conditions, warranties, representations or other terms which may apply to Our Website or any content on it as well as to the Materials, whether express or implied.
We will not be liable to any user for any loss or damage, whether in contract, tort (including negligence), breach of statutory duty, or otherwise, even if foreseeable, arising under or in connection with:

  • The use of, or inability to use, Our Website; or
  • The use of or reliance on any content displayed on Our Website.

As User, please note that We only provide Our Website for educational and private use. You agree not to use Our Website for any commercial or business purposes, and We have no liability to you for any loss of profit, loss of business, business interruption, or loss of business opportunity.

We will not be liable for any loss or damage caused by a virus, distributed denial-of-service attack, or other technologically harmful material that may infect your computer equipment, computer programs, data or other proprietary material due to your use of Our Website or to your downloading of any Materials on it, or on any website linked to it.

4. Viruses

We do guarantee that this Website and the Materials will be secure or free from bugs or viruses. Users are responsible for configuring their information technology, computer programs and platform in order to access Our Website. Users should use their own virus protection software.
Users must not misuse Our Website by knowingly introducing viruses, trojans, worms, logic bombs or other material which is malicious or technologically harmful. Users must not attempt to gain unauthorized access to Our Website, the server on which Our Website is stored or any server, computer or database connected to Our Website. User must not attack Our Website via a denial-of-service attack or a distributed denial-of service attack. We will report any such breach to the relevant law enforcement authorities and We will co-operate with those authorities by disclosing the identity of the users to them. In the event of such a breach, your right to use Our Website will cease immediately.

5. Third party’s website

The Website may include hyperlinks that lead or indirectly refer to websites or web pages owned by third parties. The placement of links to such websites or pages does not in any way imply approval of their contents. We hereby expressly states that We have no control over the content or other characteristics of said websites and decline all and any liability for their content or characteristics or for any other form of loss or damage arising from the use thereof. We also make reference to these websites’ own terms of use.

6. Prohibited uses

If the Website contains online forums, or other message or communication facilities, We are not responsible for the content or quality of contributions by Users. Opinions expressed by Users do not necessarily reflect the opinions of Eurordis. We maintain that online forums and other message facilities are not replacements for individual counseling, or consultation with a health care professional.
If the Website contains online forums, or other message or communication facilities, Users shall not do any of the following:

  • Defame, abuse, harass, stalk, threaten or otherwise violate the legal rights of others;
  • Publish, post, distribute or disseminate any defamatory, infringing, obscene, indecent or unlawful material;
  • Upload or attach files that contain software of other material protected by intellectual property rights unless the User owns or controls the rights thereto or have received all necessary consents;
  • Upload or attach files that contain viruses, corrupted files, or any other similar software or programs that may damage the operation of another’s computer;
  • Upload, e-mail, transmit or otherwise make available unsolicited advertising of any goods or services, or conduct or forward surveys, contests, “spam” or chain letters; and
  • Promote any commercial product, medicinal product or health service for the purpose of, or resulting in, personal financial gain or act as a representative of a for-profit organization.

Users specifically acknowledges and agrees that We are not liable for any conduct of any other User, including, but not limited to, the types of conduct listed above.

7. Intellectual property rights

We are the owner or the licensee of all intellectual property rights in the Website and in the Materials published on it. Those works are protected by copyright laws and treaties around the world. All such rights are reserved. 
Reproduction of portions of the Website and/or the Materials, whether in paper or electronic media or other form, is only authorized for personal, non-commercial use and recopy to individual third parties for their personal information or to rare disease organizations for educational use, save where otherwise stated, provided that:

  • the User acknowledges the Website as the source of the Materials,
  • such an acknowledgement and suitable reference to Eurordis is made in the copy of the Materials, and
  • the User informs third parties that they are subject to and must comply with the Conditions of Use of this Website. This permission is, however, revocable at any time by Eurordis.

The User may not copy otherwise, republish, lend, post on servers, transmit or redistribute to (mailing) lists this information for commercial purposes or for compensation of any kind without prior written permission from Eurordis.
If you print off, copy or download any part of Our Website in breach of the Conditions of Use, your right to use Our Website will cease immediately and you must, at Our option, return or destroy any copies of the Materials you have made.

8. Linking to our Website

You may link to Our Website or to any of its pages without having to ask permission. However, you must do so in a way that is fair and legal and does not infringe Our rights in particular relating to Our logo, acronym and intellectual property rights.
A link should not be used for the promotion of any commercial products or services.
You must not establish a link in such a way as to suggest any form of association, approval or endorsement on Our part where none exists.
You must not establish a link to Our site in any website that is not owned by you.

9. No reliance on information

The Materials on Our Website are provided for general information and educational purpose only. It is not intended to amount to medical advice on which you should rely. We cannot respond to questions concerning the medical aspects of a rare disease. We do not employ qualified medical personnel or information specialists to give medical advice, diagnose illness, or offer referrals. You must obtain professional or specialist advice before taking, or refraining from, any action on the basis of the Materials on Our Website.
If you need help finding a patient group for your disease, email Us at
Please note that We may update Our Website from time to time, and may change the Material at any time. However, any of the Material on Our Website may be out of date at any given time, and We are under no obligation to update it. We do not guarantee that Our Website, or any Material on it, will be free from errors or omissions.

10. Donations

By making a donation on this Website, you will help empower the European rare disease community and advocate for rare disease patients at national and European levels.

Your donation is secure. In order to make a valid donation, the form that is available at the dedicated page must be fulfilled. To enable the best use of your donation and because of administrative and credit card charges, We would appreciate if your donation was not less than 10€.

Donations are tax deductible for French residents (individuals and private companies). Donations can also be made from any other country in the world. All donations are calculated in euros (€).

No refund will be made once a donation is made

11. Applicable law and competent court

The Conditions of Use are governed by French law only and shall be constructed accordingly. In case of disputes, only the courts of Paris shall have. 

12. Changes to Conditions of Use

Any future changes We may make to Our the Conditions of Use will be posted on this page. Please always verify whether you have consulted the latest version of the Conditions of Use. Your continued use of Our Website constitutes your agreement to this Conditions of Use and any updates thereto.
These Conditions of Use were last modified and revised on 4 November 2015.

13. Contact

Questions, comments and requests regarding these Conditions of Use are welcomed and should be addressed to at Eurordis, Rue Didot 96, 75014 Paris, France or