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

June 2022

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.

Read the statement

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases