The FINEERR project may provide a starting point for stakeholders involved in the process of funding and access to RD-targeted therapies to provide the necessary resources and implement measures to improve both the quality of life and life expectancy of patients with RDs.
A coordinated effort is required from the different stakeholders, including the pharmaceutical industry, with clear leadership of healthcare authorities, to allow the overall healthcare system to meet the technical, political, economic, and social challenges ahead. Future studies should explore this issue further to assess how best to implement these recommendations over time.