EURORDIS, the European Rare Disease Organisation, and EFPIA, the European Federation of Pharmaceutical Industries and Associations issue Joint Statement on how to improve patient access to medicines

The EURORDIS-EFPIA Joint Statement on proposals to improve patient access to medicines was published on June 15 2022. As the EURORDIS-EFPIA press release reads “This is the first time that EURORDIS-Rare Diseases Europe, as a patient organisation, has come together with the pharmaceutical industry’s European organisation in such a structured dialogue. Discussions focused on how to improve patient access to orphan medicinal products, which remains inequitable across countries and routinely delayed”. EURORDIS further comments that Improving patient access requires a joint effort and invites other stakeholders (EU European Commission, Member States, European Parliament, and civil society, including patient organisations, researchers, to work together to advance the interests of rare disease patients in Europe.

The Joint Statement is a very important step forward in addressing inequalities in access to Orphan Medicinal Products (OMPs) across Europe, a problem which many of our patients are faced with, and we hope it will lead to real progress in the not too distant future.

The three sets of proposals relate to:

  • increased equity of access for patients and solidarity between EU Member states, including differential pricing to to better align medicines’ prices with countries’ ability to pay, which can help to address affordability constraints in lower-income EU Member States;
  • improved HTA and Pricing and Reimbursement (P&R) processes, including streamlining value assessment processes through cross-country collaboration;
  • accelerated needs-led innovation, by launching a “Moonshot” for rare diseases, “whereby more coordinated, targeted, and collaborative basic and translational research would allow to unlock a new wave of innovation.

EFPIA is the European Federation of Pharmaceutical Industries and Associations, represents the biopharmaceutical industry operating in Europe. It was founded in 1978 and has a direct membership of 36 national associations, 39 leading pharmaceutical companies and a growing number of small and medium-sized enterprises (SMEs).


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