OIFE’s Youth Coordinator Stephanie is one of the representatives at Rare Disease Week 2021.

Did you know that the first Brussels Rare Disease Week starts tomorrow?

#RareDiseaseWeek brings together Members of the European Parliament (MEPs) and rare disease patient advocates from across Europe to exchange ideas and ensure fairer and more inclusive policies for people with #rarediseases. OIFE has three young people representing their countries at Rare Disease Week 2021: Lars Romundstad (Norway), Marta Sofia Rodriguez (Portugal) and Stephanie Claeys (Belgium).

Rare Disease Week is a week-long series of events organized 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.

Learn how you can get involved at the webpages of EURORDIS.