Why get involved?

Learn why thousands of people have become involved so far and why you should too.

Have a say in EU policy making

Strategies and plans for rare diseases are currently being developed by the European Union and many of its Member States. The results taken from the Polka Decide project will be used and debated at the European Conferences on Rare Diseases providing valuable data for advocating policies chosen by the rare disease community at a national and EU-level.

Improve your understanding of complex and highly relevant issues

The six Decide topics were carefully selected on the basis of their relevance to the rare disease community.

For example, in early 2011 the EU released a directive on cross border healthcare and gave member states until 2013 to transpose this into national law. The Decide topic entitled ‘Cross Border Health Care’ provides a good introduction to the subject and helps uncover some of the key issues which need to be addressed by patient organisations, hospitals and health care providers.

See all the Decide rare disease topics.

Participants feedback:

Nick Sireau, President of the AKU Society:

‘Decide provides a fantastic opportunity to learn about some of the key issues facing rare disease patient groups today. I was thoroughly impressed by the quality of the session and how much I learnt.'

Jana Mbundi, Tuberous Sclerosis Association:

“I've already taken part in three Decide sessions. This debate session is a great tool to engage people from all walks of life to talk about various issues relating to rare disease patients and their families. It can easily be used to increase public awareness of rare diseases, the obstacles patients and their families have to deal with, possible solutions and what the general public can do to help.”

Sonja Van Weely, Dutch Steering Committee on Orphan Drugs:

"The participants of the Dutch Decide sessions were quite enthusiastic afterwards. They appreciated the discussions within the topics. Several participants have indicated to me that they would like to run the sessions within their own organisation in the near future".

 

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