Tuesday 14 September 2021, 9h-10h30 CET
About the webinar
The workshop aimed to present the methodologies for assessing burden of disease, with a specific interest on rare diseases. Expected outcomes were to engage the community in this important topic and build new collaborations.
The webinar was organized jointly with the European Joint Programme on Rare Diseases (EJP RD), and held as part of the EJP RD General Assembly meeting.
|9h00||Welcome & Opening
— Dr Daria Julkowska, Scientific Coordinator of the European Joint Programme on Rare Diseases
|9h05||Burden of disease: what is it and why does it matter for rare diseases?
— Prof Dr Brecht Devleesschauwer, Sciensano, Belgium
Download the presentation
|9h25||Burden of Duchenne muscular dystrophy in Belgium
— Prof Dr Marjan Cosyns, Sciensano, Belgium
|9h35||Burden of transthyretin amyloidosis (ATTR) in Portugal
— Dr Mónica Inês, Pfizer Portugal
|9h45||Beyond the physical – The true impact of rare disease
— Allison Watson, EpiCARE European Reference Network
|9h55||ERICA: WP3 Patient centred research and Patient Reported Outcome Measures
— Dr Maria del Mar Manu Pereira, The European Rare Disease Research Coordination and Support Action
|10h05||Burden of RDs: points to consider on the economic and social dimensions
— Prof Dr Giuseppe Turchetti, Scuola Superiore Sant'Anna, Italy
|10h15||Q&A discussion with the audience