International Workshop on Rare Diseases and Orphan Drug Registries

An International Workshop “Rare Diseases and Orphan Drug Registries” organized in the framework of the EPIRARE project (“European Platform for Rare Disease Registries”, co-funded by EU Commission, DG SANCO) will be held from October 8-9, 2012 at the Italian National Institute of Health – Viale Regina Elena, 299 - Rome (Italy).

The workshiop is open to scientists, clinicians, patients’ and parents’ Associations, policy makers and enterprises. The main aims of the workshop are:

The main aims of the workshop are:

(i) to share different experiences in the registration of rare diseases, including rare cancers and malformations, in Europe and beyond;
(ii) to highlight the strengths and opportunities of linking rare disease registration activities, orphan drug post-marketing surveillance, etc;
(iii) to promote the sustainability and networking of registration activities;
(iv) to share views in building up a common platform for registration activities devoted to research, public health and other purposes.

EPIRARE (European Platform for Rare Disease Registries) which started officially on April 15, 2011is a three-year project co-founded by the European Commission within the EU Program of Community Action in the field of Public Health. 

Deadline for abstract submission is 31st July 2012.
Deadline for registration is 31st July 2012.
Notification of abstract acceptance is 31st August 2012.

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