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].

National Alliances

RADIORG – Rare Diseases Organisation Belgium

National Alliance
Ingrid Jageneau


Waiting Room

Symposium about Rare Diseases

Le 26 février, à l’occasion de la Journée des Maladies Rares 2021 (28/02/21), le Centre des Maladies Rares du CHU… Continue reading Symposium about Rare Diseases

Webinar Rare Diseases

Webinar concerning Rare Diseases Metabolic diseases are rare diseases. Implementation of the Belgian Rare Disease Plan, update Register Now!

Not a Unicorn
whole country

RaDiOrg organised a full digital media campaign with 2 objectives: raising awareness on rare diseases towards the larger public and stakeholders &… Continue reading Not a Unicorn

Other Friends


Country Organiser

Spierziekten Vlaanderen vzw

Country Organiser
Karin Moons