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septiembre 2022

Brussels Rare Disease Week 2023


© European Union, 2021

Welcome to the Rare Disease Week 2023!


EURORDIS is delighted to welcome you soon at the second edition of the Rare Disease Week (RDW) ! After a virtual edition in 2021 that brought together more than 30 patient advocates, we are excited to announce that the RDW 2023 will finally be held in-person at the heart of Europe in Brussels.

The goal of these four-days series of events is to empower rare disease patient advocates with knowledge and skills enabling them to effectively participate in advocacy activities at the EU level and, as a result, to influence the EU decisions that have a direct impact on their lives. 

Through RDW, the hope is also to raise awareness of rare diseases amongst EU decision-makers and present a strong and united message to MEPs and other policy-makers in Brussels on behalf of the rare disease community.

Below, you will find more information about the event (programme, practicalities, webinars etc) that will be regularly updated.

As part of Brussels Rare Disease Week, MEP Frédérique Ries will host a conference, ‘For a patient-driven evolution of the Orphan Medicinal Product Regulation: Addressing unmet needs‘, in the European Parliament on Wednesday 8 February. This conference will reflect on how the EU can ensure that more and better treatments are available, accessible and affordable for people living with rare diseases. The live-streamed event will allow for the sharing of patients’, clinicians’, regulators’ and developers’ perspectives.

When?

The RDW itself will be held from Monday 06 February to Thursday 09 February 2023, in the lead up to Rare Disease Day 2023 (28 February). The stay in Brussels is preceded by an online mandatory programme composed of 2 training modules and 3 webinars. 


Programme

Brussels RDW 2023 schedule of events in Brussels 

Download it here.

Preparation

In preparation for the week, participants will be invited to take a mandatory training course (online) of approximately 2 hours and to participate in 3 preparatory webinars (online)

Webinar 1

Welcome + Meet the EU institutions
(18 November from 2:30 pm to 4:30 pm CET)

Webinar 2

Advocacy and Skills Webinar
(28 November from 2:30 pm to 4:30 pm CET)

Webinar 3

Building a coordinated advocacy message
(17 January from 2:30 pm to 4:30 pm CET)

The links to the webinars will be sent by email to all participants.

Practicalities

Download them here.

Contact

For any questions, please contact: