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").
1. Purpose of our website
The main objective of Our Website is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The Rare Disease Day takes place on the last day of February each year.
The Website provides information in relation to (i) Rare Disease Day and all of the related events happening around the world, (ii) the history of Rare Disease Day with highlights of what has happened in past years, (iii) patients living with a rare disease and (iv) support from all around the world for the cause.
The information is available to any internet users, who choose to access the Website ("Users") and is in the form of, including but not limited to, texts, pictures, posters, video and audio files (together "Materials").
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.
While, You are responsible for making all arrangements necessary for you to have access to Our Website, please note that Our Website has been designed to adhere closely to accessibility recommendations and guidelines, in particular to allow Users with motor or visual disabilities full access to the content and Materials made available by Eurordis. If you encounter any difficulties using Our Website, e-mail Us at [email protected]
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.
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
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 counselling, 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.
We have the right to remove any posting you make on our Website if, in our opinion, your content does not comply with any of the types of conduct listed above. Users specifically acknowledge and agree that We are not liable for any of these conducts of any other User.
7. Uploading content to our website
Whenever you make use of a feature that allows you to upload content to Our Website, amongst others via features such as Post Your Event, Tell Your Story or Raises and Joins Hands you shall also comply with the types of conduct listed above in Section 6. (Prohibited Uses), and you shall agree and acknowledge that:
- Any content you upload to our Website will be considered non-confidential and non-proprietary.
- Although you retain all of your ownership rights in your content, you grant Us a perpetual, worldwide, non-exclusive, royalty-free, transferable and sub-licensable licence to use, reproduce, distribute, modify, prepare derivative works of, display, and perform all of that content. We may use your content for various purposes such as communication and fundraising purposes in connection to Rare Disease Day and Eurordis.
- When requested by a judicial authority or obliged by law, we will disclose your identity to any third party who is claiming that any content uploaded by you to Our Website constitutes a violation of their intellectual property rights or of their right to privacy.
8. Intellectual property rights
General – 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.
- We allow Users to freely download and reproduce the Materials on Our Website 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.
However, reproduction of the Materials, whether in paper or electronic media or other form, is only authorized for personal and non-commercial use and in support of activities related to the Rare Disease Day, including but not limited to, fundraising activities for your own events and/or organization.
In no circumstance, the User may copy otherwise, republish, lend, post on servers, transmit or redistribute to (mailing) lists this information for commercial purposes without the prior written permission from Eurordis.
If you print off, copy or download any Materials 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.
Rare Disease Day logo –The Rare Disease Day logo, which is a registered trademark, may not be used for commercial purposes, but only in support of activities related to the Rare Disease Day. As the Rare Disease Day logo is a symbol of a global partnership in the search for ways of improving the lives of those affected by rare diseases, the logo can only be displayed in the spirit in which it was intended.
The logo, if used, should be used stand alone, in the format available on the Website. You may not alter the logo in any way such as by changing the design, colours or the proportions, or crop it or combine it within any other logo. In case it is not possible to use the correct colours due to technical limitations, you shall use the logo in black and white. A non-compliant use of the logo will constitute a violation of Eurordis' trademark rights.
9. 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.
10. 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. Our Website does not contain neither any kind of index or database of individual rare diseases.
If you seek information on a specific rare disease, we recommend Users to visit the following website www.orpha.net. Additional valuable rare disease information can be found on the website of Eurordis at www.eurordis.org on the following page: Find information or help for a rare disease.
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.
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 jurisdiction
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 January 2016.
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 [email protected].