Breaking the Access Deadlock to Leave No One Behind

A contribution by EURORDIS and its members on possibilities for patients' full and equitable access to rare disease therapies in Europe

EURORDIS Position Paper Breaking the Access Deadlock

This position paper is a contribution from EURORDIS and its members that offers a synthesis of their analysis, reflections and perspectives on the issue of access to rare disease therapies.

The position paper sets out a new four-pillar approach to tackling the challenges that prevent patients’ access to care and medicines, as well as the ambition to have 3 to 5 times more new rare disease therapies approved per year by 2025, 3 to 5 times cheaper than today.

In the paper, EURORDIS calls for a new model based on a collective conversation involving all stakeholders (patients, the pharmaceutical industry, national competent authorities, national health ministries, researchers, scientists and the European Medicines Agency).

 

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The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative 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