RARE DISEASE AND ORPHAN DRUG REGISTRIES International Workshop

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

Contact:

Domenica Taruscio

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

[email protected]