Brussels Rare Disease Week 2021

Rare Disease Week 2021.png

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

Rare Disease Week is a week-long series of events organised by EURORDIS in Brussels, including a series of preparatory webinars. It targets rare disease patient advocates in a view to empower them with knowledge and skills to effectively participate in advocacy activities at the European level and influence the EU decisions that have a direct impact on the lives of people living with a rare disease.

It aims 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. Through a number of activities and events, including training sessions, meetings with policy makers and networking events, RDW participants will be able to put their knowledge into practice and raise awareness of their rare diseases.

RDW numbers.png

Brussels Rare Disease Week Agenda

Due to COVID-19 the Brussels Rare Disease Week 2021 will take place online. Participation is reserved for RDW participants only, unless mentioned otherwise. (Central European Time, UTC+1)

Monday 22 February

10:00-13:00 – Model European Union Model EU is an interactive role-playing game where the knowledge of the webinars will be put in practice. Participants will simulate being members of the European Parliament to better understand the legislative process and the interaction with different groups of stakeholders, including lobby groups as well as other EU institutions.

19:00-21:00 – Secret fun activityStay tuned!

Tuesday 23 February 

13:30-18:30 – Rare 2030 Final Policy Conference (Open to public) The Rare 2030 Final Event marks the end of this two-year foresight study and will be the occasion to present the Rare 2030 policy recommendations for a new policy framework in presence of high-level speakers, such as Member of Parliament Frédérique Ries, or European Commissioner for Health and Food Safety Stella Kyriakides to name just a few.

14:00-15:00 – Meeting with MEPParticipants will collectively meet MEP Tilly Metz (Greens/EFA, Luxembourg) who has agreed to give them a glimpse of what it means to be a Member of the European Parliament and answer any questions they might have.

Wednesday 24 February 

10:00-11:00 – Meeting with European CommissionParticipants will collectively meet Ms Hélène Le Borgne (Policy and Programme Officer for DG Research and Innovation). Hélène will give participants some more information about what the daily work of a Commission official looks like

14:00-15:00 – Meeting with Permanent RepresentationA health attaché (TBD) will present his/her experience and daily work: how they interact with their national government, negotiate on behalf of their country, and receive input from experts and stakeholders.

17:00-19:30 – Black Pearl Awards (Open to public)The EURORDIS Black Pearl Awards recognise the outstanding achievements and ground-breaking work of those committed to improving the lives of people living with a rare disease.

Note: The EURORDIS secretariat will ensure that all participants have the chance to meet at least one MEP from their country and/or an official of their Permanent Representation to the EU.

Thursday 25 February 

10:00-13:00 – Group work: unravelling the CouncilParticipants will help design a strategy on advocating for legislative change at the level of the Council of the European Union. Participants will develop the strategy collectively and then focus on the different steps of the process in smaller groups.

Friday 26 February 

10:00-13:00 – Debriefing & FeedbackThe moment to celebrate the end of the Brussels Rare Disease Week, share experience and look into the future.


The main objectives of Rare Disease Week include:

  • Raising awareness on rare diseases with MEPs and other policy-makers
  • Engaging members of the network of Parliamentary Advocates for Rare Diseases and expanding their opportunities
  • Empowering participants with knowledge about advocacy in Brussels, which they could also use at local and national levels.
  • Establishing a EU/national network of people who can readily participate in advocacy campaigns in Brussels


The preparation for Rare Disease Week includes a series of preparatory events (webinars) about EU institutions, the European Union legal framework, and enhancing your skills as a rare disease patient advocate.

A total of seven webinars have been planned for the first-ever Brussels Rare Disease Week, namely:

  • Introduction to RDW (20 October 2020)
  • EU affairs 1, meet the EU institutions (12 November 2020)
  • EU affairs 2, legislative procedures (8 December 2020)
  • EU affairs 3, how to navigate your way through the “Brussels maze” (17 December 2020)
  • Skills webinar (14 January 2021)
  • Rare2030 (21 January 2021)
  • Logistics webinar ahead of RDW (12 February 2021)

All webinars are recorded and available for all RDW participants. 


For any additional information or to register for Rare Disease Week 2023, please contact:

Valentina Bottarelli
Public Affairs Director & Head of European and International Advocacy


Page created: 07/08/2020
Page last updated: 06/10/2021
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