About us

Established in 2020 the European Expert Group on Orphan Drug Incentives (OD Expert Group) brings together representatives of the broad rare diseases community, including researchers, academia, patient representatives, members of the investor community, rare disease companies and trade associations.

This group aims to become the source of ground-breaking ideas and potential solutions that will provide input to the OMP Regulation Evaluation. The initiative is led by a steering group composed of EURORDIS, The Voice of Rare Disease Patients in Europe and the European Confederation of Pharmaceutical Entrepreneurs (EUCOPE) representing several companies focused on finding new therapies for rare disease.

The group is chaired by Professor Maurizio Scarpa, Coordinator of MetabERN. The following OD Expert Group members are sponsoring and providing expertise to the initiative: Alexion, Biogen, Bristol Myers Squibb, Chiesi, PTC Therapeutics, Takeda and EUCOPE.

Copenhagen Economics serves as Knowledge Partner to this initiative. The secretariat is led by CONCILIUS AG.

Focus Groups

The Expert Group is focusing on three areas to develop concrete policy proposals for potential improvements of the European OMP Incentives environment. These areas are:

  • Prioritisation and optimisation: addressing therapeutic areas with currently no treatment and to support the delivery of continued innovation for rare diseases where treatments exist
  • Regulatory pathways: finding ways to optimize and accelerate regulatory pathways for orphan drugs
  • Development incentives: actions tailored to support OD development process, based on other international experience and ideas to trigger collaboration between academia, industry and regulators in Europe