orpha.net/

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 their database for information on a rare disease here.

Orphanet do not respond to personal queries about a Rare Disease.