Epirare Team

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 …

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Associated Partners

Domenica Taruscio, Luciano Vittozzi, Sabina Gainotti, Yllka Kodra, Emanuela Mollo, Martina Greco Coordinating Team – National Centre for Rare Diseases, Istituto Superiore di Sanità (Italy) Rumen Stefanov, Tzonka Miteva Information Centre for Rare Diseases and Orphan Drugs-BAPES (Bulgaria) Franco Cavallo University of Turin (Italy) Manuel Posada de la Paz, Manuel Hens, Ana Villaverde, Ignacio Abaitua …

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The EPIRARE Meetings

Project achievements including internal meetings. See the datails of EPIRARE meetings: Rome, 11-12 July 2011 Brussels, 23 May 2012 Rome, 8-9 October 2012 Rome, 21-22 October 2013 Rome, 4-5 March 2014 Rome, 24-25 November 2014

Final EPIRARE Deliverables

DELIVERABLE 1.1 The current situation, the challenges and the expectations on Patient registries and Databases. I – The current context DELIVERABLE 1.2 The Current Situation, the Challenges and the Expectations on Patient Registries and Databases. II – Results of the Patient Survey DELIVERABLE 1.3 The current situation, the challenges and the expectations on Patient registries …

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The Epirare Survey

The EPIRARE survey intends to explore the functioning, resources, problems, needs and expectations of existing registers in European Member States and in other Countries. The final aim is to develop tools and services in support of existing registers and to favour the creation of new ones where needed. The survey is directed to both active …

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Background

The interest of researchers in the establishment of disease registries, is shown by the increasing number of RD registers in EU Member States as national or local initiatives mainly located at universities (Orphanet, 2009). Applications for funding RD networks, promoting data sharing and collaboration among researchers, are also submitted regularly to the European Commission. The …

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Advisory Board

Advisory Board BELGIUM Herman Van Oyen, Elfriede Swinnen, Viviane Van Casteren Institut Scientific de Santé Publique DENMARK Ester Garne Epidemiology department, University of Southern Denmark FRANCE Jean Donadieu CHU Paris Est – Hôpital d’Enfants Armand-Trousseau GERMANY Olaf Hiort Universitätsklinikum Schleswig-Holstein, Lübeck GREECE Sophia Tzala  Hellenic Centre for Disease control and prevention HUNGARY Janos Sandor University …

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International Summer School – „Rare Disease and orphan drug registries“

The course will take the participants through the main concepts and practical steps that must be undertaken in the establishment and management of a rare disease registry to ensure its usefulness, soundness and sustainability. The course will provide basic notions on the methodology of observational studies with a view to the specificity of rare disease …

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RARE DISEASE AND ORPHAN DRUG REGISTRIES – International Workshop

The International Workshop “Rare Disease and Orphan Drug Registries” is organized in the framework of the EPIRARE project (“European Platform for Rare Disease Registries”, co-funded by EU Commission, DG SANCO). It is open to scientists, clinicians, patients’ and parents’ Associations, policy makers and enterprises. The main aims of the workshop are: (i) to share different …

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