What can I use the data for ?

Legal Issues : We have chosen to apply the Commons Attribution 4.0 International (CC BY 4.0) to all copyrightable parts of our databases. This means that you are free to copy, distribute, display and make commercial use of these databases in all legislations, provided you give us credit.

You must indicate if you have made changes to the data. This can be done so in a reasonable manner, but not in any way that suggests that Orphanet endorses you or your use.

You may not apply legal terms or technological measures that legally restrict others from doing anything the license permits.

What datasets and ontologies do you offer?

We have described our freely accessible datasets, request datasets, ORDO and HOOM in a series of documents, below. These documents also include annotated samples of the data, and schemas when applicable: free products description, on request products description, ORDO and HOOM.

What is an XML file? How do I use it?

If you have to ask, you are probably not at ease with parsing and processing XML. Extensible Markup Language (XML) is a markup language that defines a set of rules for encoding documents in a format that is both human-readable and machine-readable.See Wikipedia for further information.But, don’t worry, it is still possible to use the data in a simple way. There is plenty of software able to open it. For instance, if you are an Excel user, it is very easy: just download a file (right-click the link and download it). Once it is downloaded, just open it with a recent version of Excel (2003 or later). Excel will transform the XML into a wonderful Excel spreadsheet. Then you can save it in any other format convenient for you (xls, cvs, txt etc.)Mac users, beware! It seems that Office on Mac OS version has some difficulties managing XML in general.

I found data on the Orphanet website which are not in Orphadata. Is something wrong here?

The data on the Orphanet website is managed daily, and the XML files are produced monthly. For more information, see the PDF to understand how are the data produced.Also, in Orphadata the dataset is a partial extraction of the data stored in Orphanet, which is also accessible at www.orpha.net for consultation purposes only. For instance in Orphanet you may find some diseases which are not rare (or rare in USA but not in Europe) while in Orphadata you will not find a non rare disease.

Can we contact you for a partnership ?

We are open to exploring partnerships. You can contact us using our contact form. I’m a student /patient/professional. I would like to ask you something about a rare disease, or for a specific case which is not related to Orphadata dataset itself.

How do I visualise the XML files ?

Some extensions for browsers (if locally installed) let you to display XML by opening the file in a new tab/window. We would advise Pretty XML or XML Viewer Plus for Firefox or Google Chrome

Legal Issues

  • How to quote ?

Non-profit organisations are authorised to copy and distribute information from the site, as long as this information is neither modified nor sold. In addition to this, the terms of the intellectual property rights and the source of the information must be provided.

The appropriate form when quoting Orphanet is: Orphanet: an online rare disease and orphan drug data base. © INSERM 1999. Available on http://www.orpha.net. Accessed (date accessed).

The appropriate form when quoting Orphadata is: Orphadata: Free access data from Orphanet. © INSERM 1999. Available on https://www.orphadata.com. Data version (XML data version).

On demand, it’s possible to use one of our logos. Please use the contact form to ask.