2nd International Workshop
21-22 October 2013
Italian National Institute of Health – Viale Regina Elena, 299 - Rome (Italy)
The 2nd International Workshop “Rare Diseases and Orphan Drug Registries” is organised in the framework of the EPIRARE project (“European Platform for Rare Disease Registries”, co-funded by EU Commission, DG SANCO).
It is open to scientists, clinicians, patients’ and parents’ Associations, policy makers and enterprises.
The Final Program of the Workshop will be based on the abstracts received.
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 registries and other platforms being developed for research;
- (iii) to promote networking of registries and contribute effectively to the strategies for the implementation of the common EU Platform for rare disease registries.