RARE-Bestpractices Conference

24 November 2016 (Istituto Superiore di Sanità, Aula Pocchiari  viale Regina Elena, 299, Rome Italy) from 8:30 to 17:00

The RARE-Bestpractices Conference will take place in Rome on the 24th 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 ( 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.

The Programme

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