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Eurordis - Rare Disease Europe

Leadership & Advocacy training: Rare Disease Week

Rare Disease Week is a 4-day series of events organised by EURORDIS in Brussels in an in-person format. The stay in Brussels is preceded by an online mandatory programme composed of 2 training modules that you’ll find below and 3 webinars. The goal 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 to raise awareness of rare diseases and present a strong and united message to MEPs and other policy-makers in Brussels on behalf of the rare disease community.

For more information on the Rare Disease Week, visit this page.

Rare Disease Week (RDW) 2023 will take place during the week of 6 February 2023 in Brussels, organised in the lead-up to Rare Disease Day 2023 (28 February)

Applications for Rare Disease Week 2023 have now closed.

Take part in free online training

Learn more about the main EU institutions and the Ordinary Legislative Procedure, the general rule for adopting legislation at the European Union level. Take the free e-learning courses below! The conditions of use for all EURORDIS e-learning courses have been licensed with Creative Commons. More information on the conditions of use.


Introduction to the European Union Institutions

⌛️ 2h


Ordinary Legislative Procedure – How are decisions taken by the EU?

⌛️ 1h30

Other e-learning courses about advocacy and leadership skills



Establishing an international cooperation

⌛️ 2h30m

United Nations image

International advocacy for rare diseases

⌛️ 2h30m

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