Patient organisations in Belgium have participated in Rare Disease Day since its launch in 2008, organising activities every year. The past two years RaDiOrg, Rare Disease Belgium, has organised national campaigns together with it’s members. In 2018 stands were held in the university hospitals throughout the country; in 2019 RaDiOrg and it’s members attracted the attention of the larger public in major trainstations throughout the country.

On Rare Disease Day 2020 Belgium hosted a number of events to raise awareness, including the 8th edition of the solidarity walk for Kabuki Syndrome and the creation of a flower carpet, of folded origami edelweiss flowers symbolising rarity, in the heart of Brussels. The EMRaDi (the first INTERREG project on rare diseases in the EMR) came to an end after 3 years of cross-border cooperation. A day meeting was held to review the project’s achievements and build on future projects aimed at improving the lives of those living with rare diseases.  

If you would like to get involved or if you know of any events that are not listed here we would love to hear from you. Write to us at [email protected].