COST Action CA18218

[Webinar] Measuring the burden of rare diseases

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
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9h25 Burden of Duchenne muscular dystrophy in Belgium
— Prof Dr Marjan Cosyns, Sciensano, Belgium
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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
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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
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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

About COST

COST (European Cooperation in Science and Technology – see is a unique platform where European researchers can jointly develop their ideas and initiatives across all scientific disciplines through trans-European networking of nationally funded research. COST is supported by the European Union (EU) Horizon 2020 Programme.

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