RD-ACTION : DATA AND POLICIES for rare diseases – RD-ACTION, the new Joint Action consisting of the member states of the European Union for rare diseases,

By bringing together efforts to improve knowledge on rare diseases and orphan drugs with support to the development of national and European policies in the field, RD-ACTION will ensure that there is an integrated, European approach to the challenges faced by the rare diseases community.

General information on the project

1) Achievements 2) Leaflet

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...

Information on Implementation of RD National Plans in Europe

1) EUROPLAN reports 2) State of the Art Rare Disease Policies in Europe 3) Review document of existing technical implementations...

Toolset for implementation of ORPHAcodes into Health Information Systems

1) Standard procedure and guide for coding with Orphacodes 2) Specifications and implementation manual for master file UPDATED 3) Master...

Learn more about RD-ACTION Workpackages

Workpackage 1

Coordination

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Workpackage 2

Dissemination

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Workpackage 3

Evaluation

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Workpackage 6

Policy Development for Rare Diseases and Integration

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Workpackage 5

Steering, maintaining and promoting the adoption of Orphacodes across MS

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Workpackage 4

Orphanet, the European database for Rare Diseases

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34 Beneficiaries

30 Collaborating stakeholders

40 Countries

8.3 M Euros budget

RD-ACTION in partner countries

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Design & Création : Agence la nageuse