Media Partnership: An EU Ecosystem for Rare Diseases: The OD Expert Group proposals for navigating the challenges ahead
Following the publication of the ambitious plan or revision of the European Pharmaceutical Legislation by the European Commission, the European Expert Group of Orphan Drug Incentives will host its first signature event to reflect on how the Union can face the challenges ahead for people affected by rare
conditions and enablers of innovation. We will present our policy recommendations for an efficient revision of the OMP Regulation by focusing on modulation of market exclusivity, and we will officially launch our proposals for an EU HTA methodology for OMPs.
Join us for an event that brings together a diverse group of rare disease experts to discuss and propose policy recommendations for improving the European legislative framework for orphan drugs. With a focus on collaboration and consensus-building, this event is meant to create a meaningful dialogue and help chart a path forward for a more effective legislative and regulatory framework, capable of addressing the needs of people with rare conditions and boosting innovation.
Established in 2020, the European Expert Group on Orphan Drug Incentives (OD Expert Group) is a multidisciplinary and cross-functional expert group that brings together representatives of the broad rare disease community, including researchers, academia, patient representatives, members of the investor community, rare disease companies and trade associations. Our experts and representatives of the decision-making processes will explore ideas for navigating the challenges ahead, trying to address the question of how to create a resilient ecosystem for rare diseases.
Organised by: The European Expert Group on Orphan Drug Incentives (OD Expert Group)
Media Partner: EURACTIV
Brussels Network Office - International Press Centre
1 Bd Charlemagne // 2nd floor
Yann Le Cam, CEO EURODIS
Victor Maertens, Government Affairs Director, EUCOPE
Matias Olsen, Public Affairs & Policy Manager, EUCOPE
Kaja Kantorska, Policy Officer Medicines: policy, authorisation and monitoring, DG SANTE
Dr. Jose Valverde, Policy Officer State of Health, European Semester, Health Technology Assessment, DG SANTE
Simon Bennett, Director Global Regulatory Policy EU, Biogen Idec
Prof. Maurizio Scarpa, Coordinator, ERN for Rare Hereditary Metabolic Diseases (MetabERN)
Michael Lyng Wolden, Global HEOR Director, Rare Disease Market Access, Novo Nordisk
Partner Copenhagen Economics
10:00 – Registration of participants
10:30 - 11:30 – First Panel
Revision of the OMP Regulation: how can we ensure a resilient ecosystem in the EU?
11:30 - 11:45 – Coffee break and change of panels
11:45 - 12:30 – Second Panel
An EU HTA fit for Rare Diseases
12:30 - 13:00 – Networking reception