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June 2022

EFPIA-EURORDIS Joint Statement on Patient Access to Medicines for Rare Diseases

Patient access to oprhan medicinal products (OMPs) across Europe remains imperfect, inequitable, and routinely delayed. EURORDIS and EFPIA, which share the goal of ensuring broader and faster access to OMPs to all European patients, have joined forces to propose impactful solutions. This joint statement presents the output of a structured dialogue between the two parties, which allowed to identify common proposals to advance this goal (whilst acknowledging areas of divergence).

The recommendations contained in this report are not simple solutions to easy problems, nor can they entirely alleviate the access challenge that rare disease patients face. Nonetheless, EURORDIS and EFPIA believe that these proposals collectively represent an important step forward and a foundation for further collaboration. Improving patient access is a joint goal and requires collaboration and commitment from all stakeholders. EURORDIS and EFPIA now invite other stakeholders – the European Commission, Member States, the European Parliament, and civil society including patient organisations, researchers, and clinicians – to match their ambition and join together to advance the interests of rare disease patients in Europe.