Improved Access to Orphan Drugs in the EU

Rare disease patients do not have equitable and timely access to the approved orphan drugs they need. This is often because the national authorities in their countries take too long to decide on the pricing and reimbursement of these drugs, thus delaying their market provision. EURORDIS is proposing a concrete measure to promote cooperation at European level in order to facilitate national decisions on pricing and reimbursement, thus reducing these delays and improving patients’ effective access to orphan drugs.

Read Eurordis Newsletter article (Dec 09) >


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