News

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.

Agenda

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

Conclusions

MEP Pernille Weiss, European Parliament

Register now to follow the event.

Posted on 8. March 2023