The International Rare Diseases Research Consortium (IRDiRC) is proud to announce the new vision and goals for 2017-2027. See the publication HERE.

We are glad to invite you to the 4th edition of the International congress of research on rare and orphan diseases that will be held in Bologna (Italy), from 7th to 10th March 2018.

It will be a moment of interaction, dialogue, study and development on issues related to rare diseases research.
Visit the website for more information on the program and to register taking advantage of the early registration fee!


Orphanet unveils a new website to mark its 20th year

Orphanet unveils a new website to mark its 20th year

Orphanet ( is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. Orphanet aims to provide high-quality information on rare diseases, and ensure equal access to knowledge for all stakeholders. Orphanet also maintains the Orphanet rare disease nomenclature (ORPHA number), essential in improving the visibility of rare diseases in health and research information systems.

Orphanet was established in France by the INSERM (French National Institute for Health and Medical Research) in 1997. This initiative became a European endeavour from 2000, supported by grants from the European Commission: Orphanet has gradually grown to a Consortium of 40 countries, within Europe and across the globe.

To mark its 20th anniversary, the Orphanet website is undergoing a complete makeover, starting with the look and feel of the site.

The new site is designed be easier to navigate and read, with simplified search options and a responsive design. Orphanet called on the expertise of the digital communications agency Addictic for this makeover.

The Orphanet team hopes that the new format will make the data in Orphanet easier to find for its different audiences. Further evolutions to improve the way data is searched and displayed will follow later in the year. Users’ feedback will be sought in the next annual Orphanet satisfaction survey.

E-Rare 2012 - Created by Toussaint Biger