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Preliminary agenda RARE-Bestpractices Conference
24 November 2016 (Istituto Superiore di Sanità, Aula Pocchiari viale Regina Margherita 299, Rome Italy) from 9:00 to 17:15
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The RARE-Bestpractices Conference will take place in Rome on the 24 of November 2016 at Istituto Superiore di Sanità, Rome, Italy. The
aim of the Conference is to disseminate the results of the RARE-Bestpractices project (www.rarebestpractices.eu) and offer a forum for
discussion among all stakeholders on how to take advantage from this work in delivering better health decisions and health policies for
rare diseases.
The event will bring together leading experts in the area of evidence synthesis documents who will discuss the methodological
advancements and knowledge resources developed by RARE-Bestpractices consortium and focus on mechanisms for ensuring the
production of reliable, relevant, usable evidence in a bid to increase the value of research on rare disease.
The RARE-Bestpractices Consortium has created a platform which is not just organized around a specific area of diseases but rather acts
as a flexible hub capable to connect other existing initiatives devoted to ensure an effective development and use of the knowledge on
rare diseases. The Conference will also be dedicated to discuss ways to strengthen the partnerships that RARE-Bestpractices has already
set up and to study the options for starting further international collaborations, combine the efforts in sharing resources and make an
efficient use of the available information. The scientific committee has already confirmed several presentations and is still at work to
enrich the programme with contributions from other partners.
The Conference is open to health professionals, policy makers, researchers, research funders and citizens involved and interested in rare
diseases health care, guideline development, health technology assessment and in improving the value of research.
Who is interested in participating in this event can register online at the Conference website or at
http://www.rarebestpractices.eu/pagine-32-registration or at
https://it.surveymonkey.com/r/RBPconference
9:20-10:00 Introduction
10:00-11:15 Session 1 Improving trustworthiness of health care guideline development on rare diseases
11:30-12:45 Session 2 Health care guidelines and orphan drugs
13:30- 14:45 Session 3 Knowledge resources for health care guideline developers and users
14:45-16:00 Session 4 Shaping the future research agenda on rare diseases: ensuring the production of reliable, relevant, usable
evidence
16:00-16:45 Session 5 Foster Collaboration
17:00- 17:15 Closing remarks
Conference chairs Domenica Taruscio, Cristina Morciano Istituto Superiore di Sanità (IT)
Scientific committee Domenica Taruscio, Cristina Morciano Istituto Superiore di Sanità (IT), Roberto D’Amico, Graziella Filippini
Associazione per la Ricerca sull'Efficacia dell'Assistenza Sanitaria Centro Cochrane Italiano (IT), Panos Kanavos London School of
Economics and Political Science (UK), Karen Ritchie Health Improvement Scotland (UK), Holger Schünemann McMaster University (CA),
Juliette Senecat, Mathieu Boudes, EURORDIS European Organisation for Rare Diseases (FR)
The RARE-Bestpractices project is funded by the European Union Seventh Framework Programme (FP7/2007-2013) under grant agreement n° 305690