Orphanet aims to provide high-quality information on rare diseases. The website allows you search for information on a rare disease and also provides information about expert centres, patient organisations, clinical trials and research projects related to that disease.

The Orphanet website provides a wide range of information including:

Database of rare diseases
Listings of Patient Organisations for each disease
Listing of expert centres, professionals and institutions connected to a rare disease
Listing of clinical trials and research projects.

Search for their database for information on a rare disease here.

Orphanet do not respond to personal queries about a Rare Disease as all available information at our disposal is freely accessible on the web site.


Please type below the keyword you would like to find and you will be shown those resouces that contain that specific term.