Media Partnership – How to address the unmet needs of rare disease patients by transforming the European OMP landscape

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.

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