OD Expert Group – Workshop in the European Parliament

After more than two years of work and close cooperation, we are honoured to announce the launch of the OD Expert Group policy proposals at a workshop in the European Parliament. The event will be hosted by MEP Pernille Weiss on March 22, 13.00-14.30 at the European Parliament and it will represent an occasion to build up a fruitful discussions on the future of the rare disease community, in particular on how the upcoming legislative revision can meet patients’ needs and boost innovation.

“A resilient EU ecosystem for rare diseases: the recommendations of the European Expert Group on Orphan Drug Incentives”

The panel discussion will include Members of the Expert Group and institutional representatives to discuss the future of the rare disease ecosystem in light also of the upcoming revision. It will be possible to participate on site if you are in possession of an EP accreditation, or alternatively you can follow the event via livestream.


Welcome and Introductory Remarks

  • MEP Pernille Weiss, European Parliament

Keynote speech


  • Morten Frank Pedersen, Head of Public Policy, Denmark & Nordic 

Presentation of proposals on the OMP Regulation


  • Simone Boselli, Public Affairs Director, EURORDIS
  • Daria Julkowska, Scientific Coordinator, European Joint Programme on Rare Diseases
  • Dr Alexander Natz, Secretary General, EUCOPE

Moderated Panel Discussion  and Q&A


  • MEP Pernille Weiss, European Parliament


Register now to follow the event.

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Posted on 8. March 2023