Polka

About the project

The Polka project ran from 31 August 2008 to 31 August 2012.

The project facilitated the consultation of the European rare disease community at large, with the aim of building consensus on preferred public health policy scenarios for rare diseases.

Scope

Patient debates on five to seven carefully chosen, rare disease public health policy themes were launched using a variety of methods such as the DECIDE game. Each debate introduced a policy scenario and will ask patients to vote.

Rare disease material was developed by experts and patient representatives for use in Polka: information packs, fact sheets, and possible policy scenarios. Moderators in various Member States organised debates with up to eight patient representatives per debate. In total, the project facilitated between 600 and 1,000 discussions across 27 countries, in 21 languages, with a minimum of 80 participants per country! Similar sessions were organised by Ecsite in museums and science centres to collect the point of view of the general population and draw useful comparisons.

Resources

Polka: Brochure