EHFG
Recordings overview

S18 - European rare disease research in crisis?

An all-hands approach to secure innovation

Session description

This session aims to break down the barriers, challenge prejudices, and spark a dynamic conversation among stakeholders involved in Research and Development (R&D) for therapies of rare diseases across Europe. We will explore how patient and health system interests intersect with the perspectives of academic and corporate researchers.In this interactive format we will discuss the limitations, opportunities, and resources required for conducting rare disease research. Key points addressed will be the functionality of rare disease research in Europe, the variety of contributions to research, the importance of European research for rare disease patients, and the attractivity of Europe compared to other regions.How do you see the role of R&D to overcome fatigue in the rare disease ecosystem and provide hope for patients suffering from rare diseases?

Speakers in this session

Greber-Platzer, Susanne
Greber-Platzer, SusanneMedical University of Vienna
Julkowska, Daria
Julkowska, DariaEuropean Joint Programme on Rare Diseases
Natz, Alexander
Natz, AlexanderEUCOPE
Weiss, Pernille
Weiss, PernilleEuropean Parliament
Löffelhardt, Peter
Löffelhardt, PeterGlobal MPN Scientific Foundation