Four new Decide toolkits have been created on the following topics :

·         Cross border healthcare

·         Neonatal screening

·         Genetic counseling

·         Orphan drugs

The toolkits are translated in 21 EU languages and are posted on the PlayDecide website (www.playdecide.eu/projects/polka). The new Decide games have been created for the Polka project. The coordinator of this project is EURORDIS, the Voice of Rare Disease Patients in Europe.

As part of this project, thousands of patients with rare diseases will play the Decide game across Europe in 2010.  A great opportunity for this will be during Rare Disease Day on the 28th of February. This year’s focus is on Research and as such, events to raise awareness about rare diseases in the scientific community will be organised across Europe on that day. 

If you are interested in organising a Play Decide game in your institution on any of the four new topics we have been developing on the issue of rare diseases, please please fill in this form. Ecsite is offering 400 euros, to cover basic costs for the organisation of the event.

 If you would like to invite rare disease patient representatives to your event, here is a list of national rare disease alliances in Europe :

Belgium -  RaDiOrg
 
Bulgaria -  National Alliance of People with Rare Diseases (NAPRD)
 
Croatia -  THE CROATIAN SOCIETY OF PATIENTS WITH RARE DISEASES
 
Denmark -  Rare Disorders Denmark (Sjaeldne Diagnoser)
 
France - Alliance Maladies Rares
 
Germany -  ACHSE Allianz Chronischer seltener Erkrankungen e.V.
 
Greece-  Greek Alliance for Rare Disease
 
Hungary -  HUFERDIS
 
Ireland -  GRDO
 
Italy -  UNIAMO - Federazione Italiana Malattie Rare
 
Luxembourg -  ALAN
 
Netherlands - Vereniging Samenwerkende Ouder en Patiëntenorganisaties (VSOP)
 
Portugal - FEDRA
 
Romania - Rare Diseases Romania
 
Spain - Federación Española de Enfermedades Raras
 
Sweden - Rare Diseases Sweden Siksförbundet Sällsynta diagnoser
 
UK - GIG - Rare Diseases UK
 

If you are interested in getting in touch with your national or local patient groups or to find out more about this opportunity please contact : Aliki Giannakopoulou, Conference and Communications Coordinator, Ecsite at agiannakopoulou@ecsite.eu

See a video about the project.