News, Events & Resources


OD Expert Group article published in Frontiers in Pharmacology

Following an intense year of discussion, work and exchanges with various stakeholders the work of the European Expert Group on Orphan Drug Incentives (OD Expert Group) was featured in an open article in the academic publication Frontiers in Pharmacology.   Today policy makers face the challenge to devise a policy framework that improves orphan medicinal […]

Posted on 10. January 2022


OD Expert Group response to the OMP public consultation

The OD Expert Group submitted its response to the Commission Public Consultation on the revision of EU rules on medicines for children and rare diseases, that took place between 7 May and 30 July. The response reflects the proposals of the final report of the OD Expert Group. In our response, we call for a […]

Posted on 2. August 2021


OD Expert Group launch event recording

The launch event of the OD Expert Group took place on 11 June and was entitled “How to address the unmet needs of rare disease patients by transforming the European OMP landscape”. The experts discussed with audiences, policy makers and panellists compelling ideas for the next decade of rare disease policies in Europe. More information […]

Posted on 21. June 2021


OD Expert Group Recommendations

The multidisciplinary European Expert Group on Orphan Drug Incentives has developed fourteen innovative proposals along the entire lifecycle of orphan drug development to address the huge unmet needs in rare diseases. The proposals range from basic research to patient access, considering the clinical development challenges, regulatory approval procedures and access mechanisms

Posted on 21. June 2021


Video on the state of rare diseases in Europe

The European Expert Group on Orphan Drug Incentives has officially launched! The below video offers a brief overview of the state of #rarediseases in Europe and introduces the Expert Group tasked with examining how to improve the situation. Our Knowledge Partner, Copenhagen Economics , has produced this videoclip to disseminate the Expert Group’s findings.

Posted on 11. June 2021