See the Legal Issues.
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.
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.
Sorry, but the files are produced via a specific process. We cannot provide on request formats and data to answer particular queries.
However, Orphadata provides access, on request, to other elements of the Orphanet database after signature of a Data Transfer Agreement.
The list of the data is in our catalogue.
Nevertheless, we are open to exploring partnerships. You can contact us using our contact form.
Sorry, we cannot provide data to answer particular queries. But you can consult the Orphanet website which may provide you with more information on your topic..
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.
Not yet, not yet... but we are working on this...
Yes, this is possible. Just ask using our contact form.