Brussels Rare Disease Week 2021

When is Brussels Rare Disease Week?

The first Brussels Rare Disease Week (RDW) will take place during the week of 22 February 2021, organised in the lead up to Rare Disease Day 2021 (28 February).

What is Brussels Rare Disease Week?

Brussels RDW is a week-long series of events organised by EURORDIS in Brussels, plus a series of preparatory webinars. The goal is to empower, rare disease patient advocates, with knowledge and skills to effectively participate in advocacy activities at the European level and as a result influence the EU decisions that have a direct impact on the lives of people living with a rare disease.

Through RDW, the hope is to raise awareness of rare diseases and present a strong and united message to Members of the European Parliament (MEPs) and other policy-makers in Brussels on behalf of the rare disease community.

What will happen on Brussels Rare Disease Week?

The week will be made up of events including training, meetings with policy makers and networking events. During the week, participants will be able to put their knowledge into practice and raise awareness of their rare disease at the European Parliament.

Preparing for Rare Disease Week

In preparation for the week, participants will be invited to participate in a series of preparatory webinars (dates subject to change, obligatory attendance to at least four):

  • Introduction to RDW (20 October)
  • EU affairs 1, meet the EU institutions (12 November)
  • EU affairs 2, legislative procedures (recording, watch at your own convenience)
  • EU affairs 3, how to navigate your way through the “Brussels maze” (recording, watch at your own convenience)
  • Advocacy skills webinar (8 December)
  • Webinar topic to be confirmed (14 January)
  • Logistics webinar ahead of RDW (12 February)

 

Rare Disease Week

Due to COVID-19 the Brussels Rare Disease Week 2021 itself will take place online. This does not mean that participants will not be able to get to know the European institutions or walk around Brussels, albeit virtually!

Monday 22 Feb Model EU role-play
Tueday 23 Feb Rare2030 Final Conference
Webinar with MEP
Individual meetings with MEPs
Wednesday 24 Feb Webinar with the European Commission
Webinar with Permanent Representation to the European Union
Individual meeting with MEPs
EURORDIS Black Pearls Award ceremony
Thursday 25 Feb Group task: How to influence the EU Council
Friday 26 Feb RDW debrief

 

A note about COVID-19

In light of the COVID-19 pandemic we have made Rare Disease Week 2021 a virtual event.

Based on our experience running our European Conference for Rare Diseases and Orphan Products online, and in covering numerous training sessions from the Open Academy to interactive training, we are confident that we can adapt to any eventuality.

We hope that future Brussels Rare Disease Weeks will be able to take place face-to-face!

Any questions please contact kostas.aligiannis@eurordis.org.

Page created: 07/08/2020
Page last updated: 04/11/2020
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases