How to participate?

Learn how to organise your own Decide session and start giving your input into rare disease issues.

We believe that patient input into the development of rare disease strategies currently developed at the European and national level is of the utmost importance.

To empower patients and representatives in becoming advocates for important rare disease policy issues, POLKA has created 6 debate games (Decide games) in 22 European languages.

Why play?

Before using Decide, like any other dialogue activity, have a clear statement of purpose: what do you want to achieve with your event? There are several reasons to engage in dialogue: from providing a direct input to a policy decision, to raising awareness on an issue.

How to play

First and foremost you need to create a POLKA specific account.

Next you need to download games in the language of your choice (click on subject, find language, click download and print according to the instructions). To further facilitate downloading and printing, all material is in PDF format.

Each kit contains all the instructions on how to set up the game. You will need to print different set of cards on coloured paper and to make a A3 photocopies of the game board for each player.

Setting up a session of Decide is very easy. It's a conversation game that requires a small group of people (4 to 8, although it works best with 5-6 people) around a table.

For more information visit the Decide website.

How to share your results

Before you can upload your results, you first need to create an event. You'll need to give it a title, a description of why it was done, the location where it took place, the details of the organiser, and the kits that were used.

Once the event is created, you can add the results of each session. Remember you need a POLKA specific account before you can do this.

Page created: 11/12/2012
Page last updated: 11/12/2012
 
 
Голос пациентов с редкими заболеваниями в Европе The voice of rare disease patients in EuropeEURORDIS Сеть организаций, представляющих интересы пациентов с редкими заболеваниями их разных стран мираRare Disease International Социальная сеть RareConnect предоставляет пациентам, их семьям и специалистам многоязычную платформу для обмена информацией и опытом RareConnect Программа Rare Barometer — это инициатива EURORDIS, направленная на проведение исследований по преобразованию опыта пациентов с редкими заболеваниями в цифры и факты, которыми можно поделиться с ответственными руководителями. Rare Barometer День больных редкими заболеваниями – международная кампания по привлечению внимания к проблеме редких заболеваний, которая по инициативе EURORDIS ежегодно проводится в последний день февраляRare Disease Day Приняв участие в Европейской конференции по редким заболеваниям и орфанным препаратам (EUCERD), которая по инициативе EURORDIS проводится каждые два года, вы получите возможность побывать на самом представительном европейском форуме по проблемам редких заболеваний.European Conference on Rare Diseases