What do you think are the most pressing challenges that EU funded research and innovation should tackle for the rare disease community? The European Commission is preparing the implementation of Horizon Europe, the next EU research and innovation programme (2021-2027) with a budget of €100 billion, in an intensive co-design process. As part of the process, the EU Commission has done an online consultation.

OIFE has provided our feedback and chose to highlight:

  • The need to develop frameworks for rare disease registries & European collaboration on rare disease research
  • More secure funding of the European Reference Networks (ERNs)
  • Develop methods for patient engagement in practise, not only in theory
  • Access to orphan drugs
  • Real access to cross border healthcare

OIFE consulted our Medical Advisory Board before providing our input.