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Eurordis 2011 – Amsterdam

 In External conferences Eurordis

Eurordis 2011 – Amsterdam

Report Eurordis 2011 – Amsterdam
Eurordis 2011

From 12 to 14 May 2011 was Casa400 hotel in Amsterdam’s annual meeting organized Eurordis.

This we have as an organization again attended. Thursday, May 12 Dutch patient organizations came together. Some of the organizations have a presentation. There was also the possibility to follow a workshop on online communities. During the day ever came forward that “care 2.0” increasingly the Internet and social media play a role.

On Thursday 12 May we, Angie and Fiona also participated in the Play Decide workshop Polka Project. This project was launched in 2009 and lasted until August 2011. The Polka Project offers people the chance of a ‘playful’ way to discuss and reflect on six flared and very serious issues in the field of rare (orphan) diseases. Think of neonatal screening, cross-border healthcare and the use of stem cells. At the end of the game, it is intended that the group on paper what they think about the subject. The information must then “uploaded” on the website of Play Decide. The game is available in 26 languages and can therefore by many people in Europe are played. The data collected is used for discussion at European level. Indeed, patients organizations from across Europe have their say when it comes to laws and regulations concerning rare diseases in Europe.

On the morning of Friday, May 13, 2011 took place the General Assembly of Eurordis. In the afternoon the conference itself started with a welcome speech by Terkel Andersen (President of Eurordis). During the afternoon, several presentations. Yann le Cam (CEO Eurordis) spoke for example about the recommendations for national plans for rare diseases. The European Commission in June 2009 to all European States commissioned a national plan on rare diseases. In the Netherlands the VSOP is going to keep doing this. Each Member State must, before the end of 2013 a national plan or at least should have a strategy for dealing with rare diseases.

Saturday, May 14, we have workshops, centers of expertise, research and training of GPs attended. The presentations or a test report can be found on the website of Eurordis.

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