7 Jun 2019
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 file for statistical reporting UPDATED 4) Recommendation for routine maintenance...

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11 Mar 2019
General information on the project

1) Achievements 2) Leaflet

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22 Feb 2019
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...

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22 Feb 2019
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 for RD coding 4) Survey of current codification situation in...

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25 Sep 2018
Publication of the RD-ACTION project report for General Public and evaluation report

Check out the short report to know more about RD-ACTION project achievements here. The evaluation report is also available here.

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10 Sep 2018
Publication of Six Policy Briefs on Sustainability of Health Systems for RD

In order to capitalize the experience and in line with the Communication from the European Commission, an important task of RD-ACTION is intended to support national authorities to quantify the...

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27 Jul 2018
RD-ACTION final meeting

The final meeting of the 3 year Joint Action on Rare Diseases, RD-Action took place in Paris on 28 June 2018. Funded by the EU's 3rd Health Programme, this Joint...

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5 Jul 2018
Final Codification workshop held in Venice 20-21 June

The final Codification (WorkPackage5) workshop was held in Venice, 20-21 June. The Workshop set the scene of RD coding situation in Europe and focused on the WP5 legacy and the...

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26 Oct 2017
2017 RD-ACTION Annual meeting

Last 10-11 of October, the annual meeting of RD-Action took place in Paris. Read full article in Orphanews here.

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9 Oct 2017
New RD-ACTION output on standardising data in ERNs

At the end of April, RD-ACTION organised a major workshop, hosted by DG Sante, in Brussels.  68 experts participated: a mixture of ERN Coordinators, EURORDIS and Orphanet partners, data/eHealth specialists,...

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22 Sep 2017
Implementation of rare disease patient coding across member states

In order to analyze the level of implementation of rare disease patient coding across european member states, a survey was conducted by the co-leaders of the RD-Action Work Package 5....

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20 Jun 2017
Sustainable public health systems for rare diseases: review available

In the framework of  RD-ACTION  a specific task was defined to identify mechanism influencing sustainability, equity and resilience of health systems for RD. A Literature narrative review resulting from this...

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20 Jun 2017
Registration open: 5th International Summer School on Rare Disease and Orphan Drug Registries

REGISTRATION OPEN: 5th International Summer School on Rare Disease and Orphan Drug Registries, September 18-22, 2017 ( For more information,  visit their website at  

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7 Jun 2017
Single home for our RD-ACTION ERN-focussed Outputs!

RD-ACTION's Policy & Integration Work-package (WP6) has a particular focus on supporting the implementation and evolution of European Reference Networks (indeed, this is a cross-cutting topic of relevance to all...

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2 Jun 2017
Standard procedure and guide for coding with Orphacodes available!

This useful document  has been produced by the co-leaders of the WorkPackage 5 in order to facilitate Orphacodes implementation in European countries. In this document, general rules for routine coding...

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10 Apr 2017
Read RD-ACTION workshop outputs on virtual care within ERNs!

The latest RD-ACTION workshop, on the topic of 'Exchanging data for virtual care in the framework of the operation of ERNs' generated several outputs of interest to the rare disease...

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23 Mar 2017
Coordination of ERN: structures and goals description

UPDATE!  To complement the official summaries provided by DG SANTE  you can read about the structure and goals of each ERN here

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4 Nov 2016
Specifications for an integrated coding application with Orphacodes document available!

Specifications for an integrated coding application with Orphacodes document is available here.

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18 Oct 2016
RD-ACTION First annual meeting

The first RD-ACTION annual meeting will be held on the 26-27 October in Paris. It is a closed meeting for all partners to discuss the first year's achievements and future...

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6 Jun 2016
Review document of existing technical implementations for Rare Diseases coding is available


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25 Apr 2016
RD-ACTION Dissemination plan available

The RD-ACTION Dissemination Plan is available here. The purpose of the plan is to outline the audience, messages, methods, timing and purpose of dissemination of the actions and results of...

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30 Mar 2016
RD-ACTION presentations at congresses

In order to keep the scientific community informed during year 1, RD-ACTION has been presented during the: European Public HealthAssociation, or EUPHA conference (14th October 2015, Milan) final event of the...

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3 Mar 2016
RD-ACTION leaflet

The new RD-ACTION leaflet is available here

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25 Jan 2016
Survey on current codification situation in MS: results available

Results of the survey to assess the current Codification situation in MS available here: framework-survey interpretation. This survey was carried out in the frame of the Steering, maintaining and promoting...

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12 Oct 2015
Consultative Group

A Consultative Group has been established to support and inform the policy work of RD-ACTION WP6. It is comprised of representatives from Beneficiaries and Collaborating stakeholders and is chaired by...

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12 Oct 2015
Kick off Meeting of the Joint Action RD-ACTION

The Kick off meeting of the Joint action was held on the 16th September in Luxembourg, it gathered 63 participants from 43 Institutions in 34 countries. Please read full article...

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10 Oct 2015
New collaborative stakeholder

We are glad to announce the joining of a new collaborative stakeholder in the RD-ACTION consortium: the Ministry of Health of Argentina is now onboard! The team led by Dr....

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Design & Création : Agence la nageuse