About this website

The purpose of this website is to provide information for rare disease patient organisations, patients, their families, carers, and any other organisation or individual concerned with rare diseases, in relation to:

  • EURORDIS activities, dedicated to improving the quality of life for those living with rare diseases
  • public health issues at the European level in relation to rare diseases and orphan drugs
  • international news and events involving rare diseases and orphan drugs of interest to patients and patient organisations
  • selected sites and sources of information of use to those affected by rare diseases


This site does not provide medical advice.
This site does not contain an index or database of individual rare diseases. EURORDIS recommends the sites of its partners, Orphanet and NORD, for visitors seeking information on a specific rare disease. Additional valuable sources of rare disease information are listed on the page of this website entitled "Find information or help for a rare disease"


The primary language of the site is English, chosen to facilitate communication among speakers of European languages. You will find complete information in the English section of this website.


A selection of information is also available in 6 secondary language sections: French, Spanish, German, Italian, Portuguese and Russian. When consulting these sections of the site, we recommend that visitors also check the English section for complete information.


This site has been designed to adhere closely to accessibility recommendations and guidelines, in particular to allow visitors with motor or visual disabilities full access to content. If you encounter difficulties using this site, please report the problem to eurordis@eurordis.org.


This site does not carry any paid advertising and does not endorse any commercial products.

We are committed to protecting the privacy of our site visitors. For details, please see our privacy statement.


For copyright information, and permissions to reprint, re-use or otherwise distribute materials, including text, images and other information, please see our disclaimer.



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This website has been funded with support from the European Union's Health Programme and the AFM (Association Française contre les Myopathies).

The material only reflects the views of the author, and funders cannot be held responsible for any use which may be made of the information contained herein.


Page created: 10/12/2009
Page last updated: 04/11/2015
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases