Media Partnership - How to address the unmet needs of rare disease patients by transforming the European OMP landscape
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The European Expert Group on Orphan Drug Incentives (OD Expert Group) has been established to discuss and bring forward innovative proposals to stimulate innovation and foster research into therapies for rare diseases.
The multidisciplinary and cross-functional OD Expert Group started its work in 2020, bringing together representatives of the broad rare disease community, including research, academia, patient representatives, members of the investor community, rare disease companies and trade associations. The Group has developed a report with 14 policy proposals to improve the Orphan Medicinal Products (OMP) innovation environment in Europe. These proposals put together different ideas on how to address the unmet needs of rare disease patients by evolving the European orphan drugs landscape from research to access.
With the general consultation for the OMP and Paediatric Regulation recently opened, the experts look forward to presenting their recommendations, as the review on the EU legislation for rare diseases represents a unique opportunity to build on and draw inspiration from many of the expert proposed solutions. The experts are keen on discussing with audiences, policy makers and panellists compelling ideas for the next decade of rare disease policies in Europe.
ORGANISED BY: European Expert Group on Orphan Drug Incentives
MEDIA PARTNER: EURACTIV
Ms Camilla Harder Hartvig, Senior Vice-President,
International Business, Alexion
Presentation of report
Ms Julia Wahl, Managing Economist, Copenhagen Economics
Dr Lucia Monaco, Chair, IRDiRC Consortium Assembly
Prof Michael Schlander, Professor of Health Economics,
University of Heidelberg/Head of Division, DFKZ
Simon Bennett, Director, Global Regulatory Policy EU, Biogen Idec
Moderated panel discussion
Ms Olga Solomon, Head of Unit, DG SANTE
Mr Yann Le Cam, CEO, EURORDIS
Dr Alexander Natz, Secretary General, EUCOPE
MEP Pernille Weiss
14.30 – 16.00 CET
A new report by a multidisciplinary group of experts bringing together researchers, academia and the pharma industry, has urged policymakers to look beyond the EU's Orphan Medicinal Products (OMP) regulation to better address the unmet needs of patients with rare diseases.