POLKA: Patients’ Consensus on Preferred Policy Scenarii for Rare Diseases

A 7-page brochure presents the POLKA project (Patients’ Consensus on Preferred Policy Scenarii for Rare Diseases) being conducted until Sept. 2011. The project fosters the opinion of patient representatives on future European policies for rare diseases, or collects their views on existing ones. Entertaining sessions called "PlayDecide sessions" familiarise patient representatives with complex scientific issues.

Read the document >

To order printed copies, read more >

Languages: English

 
 
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