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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,

RD-ACTION : DATA AND POLICIES 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. State of the Art of Rare Diseases Policies in Europe. Specifications for an integrated coding application with Orphacodes document available! RD-ACTION First annual meeting.

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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, | rd-action.eu Reviews

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RD-ACTION : DATA AND POLICIES 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. State of the Art of Rare Diseases Policies in Europe. Specifications for an integrated coding application with Orphacodes document available! RD-ACTION First annual meeting.

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9 orphanews

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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, | rd-action.eu Reviews

https://rd-action.eu

RD-ACTION : DATA AND POLICIES 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. State of the Art of Rare Diseases Policies in Europe. Specifications for an integrated coding application with Orphacodes document available! RD-ACTION First annual meeting.

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rd-action.eu

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About us – RD-ACTION : DATA AND POLICIES for rare diseases

http://www.rd-action.eu/about-us

RD-ACTION : DATA AND POLICIES for rare diseases. Promoting implementation of recommendations on policy, information and data for RD Joint action. The general objectives of RD-Action are to:. Support the further development and sustainability of the Orphanet database, the biggest global repository of information on RD. Contribute to solutions to ensure an appropriate codification of RD in health information systems. And the EUCERD JA. Design and Création : Agence la nageuse.

2

RD-ACTION Dissemination plan available – RD-ACTION : DATA AND POLICIES for rare diseases

http://www.rd-action.eu/news/rd-action-dissemination-plan-available

RD-ACTION : DATA AND POLICIES for rare diseases. RD-ACTION Dissemination plan available. The RD-ACTION Dissemination Plan. The purpose of the plan is to outline the audience, messages, methods, timing and purpose of dissemination of the actions and results of the JA. A Stakeholder Analysis ( here. Design and Création : Agence la nageuse.

3

RD-ACTION presentations at congresses – RD-ACTION : DATA AND POLICIES for rare diseases

http://www.rd-action.eu/news/titre-4

RD-ACTION : DATA AND POLICIES for rare diseases. RD-ACTION presentations at congresses. In order to keep the scientific community informed during year 1, RD-ACTION has been presented during the:. October 2015, Milan). Final event of the PARENT Joint (23 October 2015,Valencia). WHO-FIC event (21 November 2015, Manchester). EXPAND final event (9-11 December 2015, Lisbon eHealth week). Workshop of eSENS (19. April 2016, Brussels). Meetings of ERN Coordinators (23rd March 2016, Frankfurt and 25.

4

Workpackage 4 – RD-ACTION : DATA AND POLICIES for rare diseases

http://www.rd-action.eu/workpackage/workpackage-4

RD-ACTION : DATA AND POLICIES for rare diseases. Orphanet, the European database for Rare Diseases. Ana Rath - Inserm. 1 Coordinate the activities of the Orphanet consortium (26 beneficiaries in this Joint action and 15 collaborating stakeholders). 3 Develop the necessary tools to track changes of the Orpha nomenclature, classifications and scientific database content, including an interactive platform allowing for managing input from the community. Design and Création : Agence la nageuse.

5

News – RD-ACTION : DATA AND POLICIES for rare diseases

http://www.rd-action.eu/news

RD-ACTION : DATA AND POLICIES for rare diseases. Specifications for an integrated coding application with Orphacodes document available! Specifications for an integrated coding application with Orphacodes document is available here. 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. RD-ACTION Dissemination plan available. A Consultative Group has been es...

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orpha.net

Orphanews : la newsletter d'Orphanet sur les maladies rares et les médicaments orphelins

http://www.orpha.net/actor/cgi-bin/derniere-newsletter-france.html

Le point en Recherche. Recommandations pour la pratique. Partenariats, offres d'emploi. Colloques, séminaires et cours. S'abonner / Se désabonner. Rechercher dans les archives d'OrphaNews France:. OrphaNews France vous souhaite de bonnes vacances d été! La prochaine parution de la newsletter aura lieu en septembre. Etat actuel des Réseaux européens de référence. DG-Sanco). Les réseaux qui passeront cette étape devraient être approuvés d'ici fin 2016. Réunira son dernier atelier en septembre. Le résul...

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Comunicati stampa - Comunicato stampa n 27/2016 - CNS: per l'emergenza terremoto i donatori di sangue programmino le donazioni. Istituto Superiore di Sanità. Il Centro nazionale sangue e le quattro Associazioni di volontari italiani del sangue AVIS, Croce Rossa Italiana, FIDAS, Fratres, invitano i donatori su tutto il territorio nazionale a programmare la propria donazione contattando l’associazione e/o il servizio trasfusionale di riferimento. ISS 24 agosto 2016. Istituto Superiore di Sanità. L’Istituto...

isns-neoscreening.org

News - ISNS

http://www.isns-neoscreening.org/nl/pages/12-news

Brexit, what does it mean for rare disease patients. The United Kingdom (UK) has voted to leave the European Union (EU) and is poised to begin the proceedings to invoke Article 50 of the 2007 Lisbon Treaty, which would set in motion negotiations on how to leave the bloc. A letter from the President of the European Association for Haemophilia and Allied Disorders (EAHAD) and the European Haemophilia Consortium (EHC). Patient organisations from countries neighbouring the UK, have also weighed in as it grea...

isns-neoscreening.org

News - ISNS

http://www.isns-neoscreening.org/isns-news

Brexit, what does it mean for rare disease patients. The United Kingdom (UK) has voted to leave the European Union (EU) and is poised to begin the proceedings to invoke Article 50 of the 2007 Lisbon Treaty, which would set in motion negotiations on how to leave the bloc. A letter from the President of the European Association for Haemophilia and Allied Disorders (EAHAD) and the European Haemophilia Consortium (EHC). Patient organisations from countries neighbouring the UK, have also weighed in as it grea...

aspformazione.rg.it

News sulla Sanità | Area Formazione - Aggiornamento ASP Ragusa

http://www.aspformazione.rg.it/aggregator/categories/1

Raquo; Feed aggregator. Raquo; News sulla Sanità. Comunicati stampa - CS n 26/2016 Rifiuti, dalla scienza la soluzione concreta. Istituto Superiore di Sanità. 1 ora 14 min. Roma, 13 agosto 2016. L’Istituto Superiore di Sanità condivide la posizione espressa dalla Società Italiana di Igiene (SITI) nell’auspicare che la soluzione del problema della gestione integrata dei rifiuti venga affrontata sulla base di evidenze scientifiche condivise. Un impegno, quest’ultimo, imprescindibile perché, soprattutto nel...

bndmr.fr

Liens utiles | Banque Nationale de Données Maladies Rares

http://www.bndmr.fr/liens-utiles

Le Comité de Pilotage. Les 131 centres de référence. Les 23 filières de santé maladies rares. Un cadre d’interopérabilité pour les maladies rares. Identification des patients et cadre juridique. Le Set de Données Minimal National. Flux et processus d’échanges. Une application de saisie : BaMaRa. Suivi de votre activité maladies rares. Le rapport d’activité annuel. Obtenir plus d’informations sur les maladies rares. Dossier maladies rares du Ministère en charge de la santé. Maladies Rares Info Services.

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Les partenaires de la BNDMR | Banque Nationale de Données Maladies Rares

http://www.bndmr.fr/la-bndmr/nos-partenaires

Le Comité de Pilotage. Les 131 centres de référence. Les 23 filières de santé maladies rares. Un cadre d’interopérabilité pour les maladies rares. Identification des patients et cadre juridique. Le Set de Données Minimal National. Flux et processus d’échanges. Une application de saisie : BaMaRa. Suivi de votre activité maladies rares. Le rapport d’activité annuel. La BNDMR est financée par le Ministère des affaires sociales et de la santé. Et leurs filières de santé. Ministère de la santé du Japon. La ma...

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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,

RD-ACTION : DATA AND POLICIES 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. State of the Art of Rare Diseases Policies in Europe. Specifications for an integrated coding application with Orphacodes document available! RD-ACTION First annual meeting.

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