RARE-Bestpractices
A platform for sharing best practices for the management of rare diseases

Coordinated by the Istituto Superiore di Sanità
National Centre for Rare Diseases

Conferencia RARE-MejoresPrácticas- comparte las mejores prácticas para el control de las enfermedades raras, 24 de noviembre, Italia

Preliminary draft agenda-RARE-Bestpractices conference

24 November 2016 Istituto Superiore di Sanità, Rome Italy

The aim of the conference is to disseminate the findings from the RARE-Bestpractices project and offer a forum for discussing with relevant stakeholders how this work could be taken into account in delivering better health decision making and health policies for rare diseases.

The event will bring together leading experts in the area of evidence synthesis documents to 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.

RARE-Bestpractices consortium has created a platform not organized around a specific disease area but rather has the flexibility to collaborate with other existing initiatives devoted to ensure an effective development and use of knowledge on rare diseases. The conference will be also dedicated to discuss ways to strengthen the partnerships that RARE-Bestpractices has already realized and the options for fostering further international collaborations to combine effort in sharing resources and making an efficient use of the knowledge available.

10:00-11:15 Session 1 Improving trustworthiness of health care guideline development on rare diseases

11:30-12:45 Session 2 Health Technology Assessment, Clinical Guidance 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

Stakeholders who are interested in participating in this event can register online their interest at: