ADVOCACY

Brussels Rare Disease Week 2021

OIFE is looking for someone who could represent us at the Brussels Rare Disease Week 2021. Would you like to apply for the position as our representative? 

When?
Brussels Rare Disease Week (RDW) will take place during the week of 22 February 2021 in Brusselsorganized in the lead-up to Rare Disease Day 2021 (28 February).

What?
This will be the opportunity to bring together a number of selected rare disease advocates and relevant policy-makers, including members of the European Parliament (MEPs), and government representatives working for the Permanent Representations to the EU, with the overarching goal to build solid long-term relationships between them.

Why?
More and more relevant policy changes take place at European level. For your organization to be part of them, it is useful to have people within your network that can support you with this. Participating in RDW will help create a pool of people who can make the link between EU-level policy and your organization

Who can participate?

  • Patient representatives affiliated to a European federation like OIFE or their member organizations (and from the EU, EFTA & EU candidate countries) that is a EURORDIS member organization.
  • Before applying please consider whether you are able to make the time commitment to participate in all events in Brussels 22-25 February and the preparatory webinars listed above (10 hours over 4 months).

Knowledge gained from participating in RDW will help you to continue to advocate at the EU level and engage in future EURORDIS advocacy efforts for years after.

When is the deadline? 
The deadline to apply with EURORDIS is 18th of September 2020. Please send an email to office@oife.org before September 15th if you should be interested in applying for the position as OIFE’s representative.

Group of People, Holding the four letters RARE

 

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