The International Workshop “Rare Diseases and Orphan Drug Registries” is organized 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 main aims of the workshop are:
- to share different experiences in the registration of rare diseases, including rare cancers and malformations, in Europe and beyond;
- to highlight the strengths and opportunities of linking rare disease registration activities, orphan drug post-marketing surveillance, etc;
- to promote the sustainability and networking of registration activities;
- to share views in building up a common platform for registration activities devoted to research, public health and other purposes.
Register online: http://it.surveymonkey.com/s/International_Workshop_Registration
Italian National Centre for Rare Diseases
Italian National Institute of Health
Viale Regina Elena, 299
00161 Rome – Italy
Phone +39 06 4990 4016
Fax +39 06 4990 4370