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Epirare - European Platform for Rare Diseases Registries

EPIRARE (European Platform for Rare Disease Registries) is a three-year project co-funded by the European Commission within the EU Program of Community Action in the field of Public Health. EPIRARE started officially on April 15, 2011. The EPIRARE deliverables are available. The issues raised by the legislation on Personal Data Protection and the actions taken by EPIRARE are dealt with in the Deliverables 2.1, 2.2, 2.3, 2.4. The relations among the EPIRARE Deliverables are presented in the Overview.

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Epirare - European Platform for Rare Diseases Registries | epirare.eu Reviews

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EPIRARE (European Platform for Rare Disease Registries) is a three-year project co-funded by the European Commission within the EU Program of Community Action in the field of Public Health. EPIRARE started officially on April 15, 2011. The EPIRARE deliverables are available. The issues raised by the legislation on Personal Data Protection and the actions taken by EPIRARE are dealt with in the Deliverables 2.1, 2.2, 2.3, 2.4. The relations among the EPIRARE Deliverables are presented in the Overview.

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1 the project

2 workpackages

3 partners

4 petition

5 publications

6 deliverables

7 meetings

8 final epirare deliverables

9 download the documents

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Epirare - European Platform for Rare Diseases Registries | epirare.eu Reviews

https://epirare.eu

EPIRARE (European Platform for Rare Disease Registries) is a three-year project co-funded by the European Commission within the EU Program of Community Action in the field of Public Health. EPIRARE started officially on April 15, 2011. The EPIRARE deliverables are available. The issues raised by the legislation on Personal Data Protection and the actions taken by EPIRARE are dealt with in the Deliverables 2.1, 2.2, 2.3, 2.4. The relations among the EPIRARE Deliverables are presented in the Overview.

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epirare.eu

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Epirare - European Platform for Rare Diseases Registries

http://www.epirare.eu/project.html

EPIRARE (European Platform for Rare Disease Registries) is a three-year project co-funded by the European Commission within the EU Program of Community Action in the field of Public Health. EPIRARE started officially on April 15, 2011.

2

Epirare - European Platform for Rare Diseases Registries

http://www.epirare.eu/pubb.html

Rare Disease Registries Classification and Characterization: A Data Mining Approach. Santoro M., Coi A., Lipucci Di Paola M., Bianucci am, Gainotti S., Mollo E., Taruscio D., Vittozzi L., Bianchi F. Public Health Genomics 2015;18:113-122 (DOI:10.1159/000369993). Characterization and classification of Rare Disease Registries by using exploratory data analyses. Orphanet Journal of Rare Diseases 2014, 9(Suppl 1):P4 doi:10.1186/1750-1172-9-S1-P4. PMID: 25352985 [PubMed] PMCID: PMC4210567. PMID: 24503590 [Pub...

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Epirare - European Platform for Rare Diseases Registries

http://www.epirare.eu/partners.html

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Epirare - European Platform for Rare Diseases Registries

http://www.epirare.eu/petition.html

Petiční/ Pétition/ Petition/ Αίτηση / Petizione / Peticije/ Peticiju / Petición/ Petition. Following the concerns raised by the report introducing the Parliamentary discussion on the General Data Protection Regulation, we have published a petition ( " Don't Stop Research on Rare Diseases! To the European Parliament and to the EU Council. Read more on the reasons for this petition in your preferred language here:. NEZASTAVUJTE VÝZKUM V OBLASTI VZÁCNÝCH ONEMOCNĚNÍ! DON’T STOP RESEARCH ON RARE DISEASES!

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Epirare - European Platform for Rare Diseases Registries

http://www.epirare.eu/wp.html

The project is organised in 8 Workpackages.

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Short Term Scientific Missions (STSM). Gender balance and involvement of early-stage researchers. ICONZ: Integrated Control of Neglected Zoonoses. Http:/ www.cistired.org/. Cysticercosis Working Group for Eastern and Southern Africa: http:/ ivs.ku.dk/english/research/about parasitology and aquatic diseases/parasitic zoonoses/cwgesa/. PigTrop: the information center about pig production in developing countries. Proceedings European Cysticercosis Working Group Meeting 2012. 12 - 14 September 2016.

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Turn on more accessible mode. Turn off more accessible mode. Skip to main content. SpainRDR - Data and Reports. Welcome to the SpainRDR website. The Spanish Rare Diseases Registries Research Network-SpainRDR. Is a project financed by the Institute of Health Carlos III (ISCIII) within the scope of the IRDiRC for the years 2012 to 2014 with 2.4 M . 160; . 160; . 160;The International Rare Diseases Research Consortium. EUROPEAN PLATFORM FOR RARE DISEASES REGISTRIES . 160; GLOBAL RARE DI...

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Referentni centri Ministarstva zdravstva i socijalne skrbi Republike Hrvatske. Referentni centar za praćenje kongenitalnih anomalija. Referentni centar za medicinsku genetiku i metaboličke bolesti djece. Referentni centar za nasljedne bulozne epidermolize. Referentni centar za bolesti metabolizma. Referentni centar za pedijatrijske neuromuskularne bolesti. Referentni centar za kliničku biokemiju i molekularnu dijagnostiku. Referentni centar za neurovaskularne bolesti. Referentni centar za solidne tumore.

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Via Pace, 9. Tel: 39 02 55 10 709. 39 02 55 03 54 14. Fax: 39 02 54 100 12. The past and future of haemophilia: diagnosis, treatments, and its complications. Prof Flora Peyvandi, MD, Isabella Garagiola, PhD,Guy Young, MD. The New England Journal of Medicine. Caplacizumab for Acquired TTP. February 11, 2016 F. Peyvandi and Others. Il Premio Grande Ippocrate per la ricerca e divulgazione scientifica. La Professoressa Peyvandi sarà premiata per aver saputo comunicare ai media le sue ricerche sulla ca...

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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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Registro Nazionale della Sindrome di Dravet e altre Sindromi correlate a Mutazione dei Gene SCN1A e PCDH19. Http:/ www.epirare.eu/. Http:/ www.iss.it/cnmr/. Http:/ www.orpha.net/. Http:/ www.eurordis.org/it.

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epirare.eu

Epirare - European Platform for Rare Diseases Registries

EPIRARE (European Platform for Rare Disease Registries) is a three-year project co-funded by the European Commission within the EU Program of Community Action in the field of Public Health. EPIRARE started officially on April 15, 2011. The EPIRARE deliverables are available. The issues raised by the legislation on Personal Data Protection and the actions taken by EPIRARE are dealt with in the Deliverables 2.1, 2.2, 2.3, 2.4. The relations among the EPIRARE Deliverables are presented in the Overview.

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L'aventure c'est l'aventure! Welcome to the real world. 28/08/2005 at 3:06 AM. 31/10/2005 at 4:43 AM. Subscribe to my blog! WELCOME TOI LE SURFEUR. Photos de l'integration a partir de la page 26. Don't forget that insults, racism, etc. are forbidden by Skyrock's 'General Terms of Use' and that you can be identified by your IP address (66.160.134.62) if someone makes a complaint. Please enter the sequence of characters in the field below. Posted on Sunday, 28 August 2005 at 3:09 AM. Don't forget that insu...

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