News

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  http://www.iss.it/cnmr/?lang=1&id=2739&tipo=3)  

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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

The REVIEW DOCUMENT OF EXISTING TECHNICAL IMPLEMENTATIONS FOR RARE DISEASE CODING is available here

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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