News

  • March 4 and 5, 2014
    EPIRARE WORKSHOP "NATIONAL REGISTRIES OF RARE DISEASES"
    National Institute of Health
    Rome (Italy)


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



Final EPIRARE Deliverables

The EPIRARE deliverables are available.

The issues raised by the legislation on Personal Data Protection and the actions taken by EPIRARE are dealt with in the Deliverables 2.1, 2.2, 2.3, 2.4.

The EPIRARE Deliverables D3, D4, D5; D9.3 describe the basic features of a European Platform for Rare Disease Registries.

These documents have been elaborated on the basis of surveys and consultations involving the many potential stakeholders of the Platform.

The results of the surveys and consultations are reported in the other EPIRARE Deliverables.

The relations among the EPIRARE Deliverables are presented in the Overview.

[Download the documents]
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