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