RARE-Bestpractices and Orphanet collaboration

Statement of collaboration signed


RARE-Bestpractices and Orphanet are to collaborate towards the shared goal of promoting and advancing knowledge on rare diseases.

Orphanet is a database offering a comprehensive and freely accessible repertory of information on rare diseases and orphan drugs. Orphanet is led by a consortium of around 40 countries, coordinated by the Institut national de la santé et de la recherche médicale (France).

A statement of collaboration was signed by Dr. Domenica Taruscio, RARE-Bestpractices leader and Dr. Ana Rath, Orphanet director on December 16, 2016.

The collaboration between RARE-Bestpractices and Orphanet involves the creation of links between Orphanet portal and RARE-Bestpractices web site and databases (RAREGUIDELINE and RAREGAP), the dissemination of news of each other’s events and activities, the contribution to workshops, meetings, symposia of each other when appropriate and the identification of further areas of interaction

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