Leaflet and documents


Name of the document File to Download
RD-ACTION leaflet .pdf
RD-ACTION Layman Final Report .pdf
RD-ACTION evaluation report .pdf
Survey of current codification situation in MS 2016 .pdf
Survey of current codification situation in MS 2017 .pdf
Review document of existing technical implementations for RD coding .pdf
Standard procedure and guide for coding with Orphacodes .pdf
Specifications and implementation manual for master file UPDATED .pdf
Master file for statistical reporting UPDATED .xls
Specifications for an integrated coding
application with Orphacodes
Recommendation for routine maintenance .pdf
RD-ACTION dissemination plan and annexes .pdf
Orphanet stakeholders’ survey .pdf
Policy briefs ‘Sustainability of Health Systems’


1. Resilience
2. Actions on Educational Programmes and Training for Professionals
3. Primary Prevention as an essential factor ensuring sustainability of health systems: The example of congenital anomalies
4. Health Systems for Rare Diseases: Financial Sustainability
5. Integrated Care
6. Patient Empowerment