Eurordis - Rare Disease Europe

Brussels Rare Disease Week 2021

Organised in the lead-up to Rare Disease Day 2021 (28 February), the first Rare Disease Week targets rare disease patient advocates to empower them to participate effectively in advocacy activities and positively impact the lives of people living with a rare disease.

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.

Objectives

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 an EU/national network of people who can readily participate in advocacy campaigns in Brussels

Preparation

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.