Rare Disease Day in Belgium
Patient organisations in Belgium have participated in Rare Disease Day since its launch in 2008, organising activities every year. Key events in celebration of Rare Disease Day, such as the National Conference for Rare Diseases at the Belgian Parliament in 2009 and the annual Belgian march for rare diseases, serve to mobilise both policy makers and the general public. Belgium’s Rare Disease Day celebrations have even gained the support of Belgian royalty, with Her Royal Highness Astrid of Belgium acting as the Patron of Rare Disease Day in 2009.
In 2016, the Belgian Association for Marfan Syndrome held its second edition of its Comedy Gala called ‘The Best of the Heart’ to raise money for research. People also released balloons with short messages attached in memory of those living with rare diseases.
The Belgian National Alliance, RaDiOrg, has grown with Rare Disease Day, first coming together in 2008. They now represent about 80 rare disease organisations in Belgium, serving as the voice for the estimated 6.5% of the Belgian population affected by one rare disease or another. RaDiOrg can be contacted directly to help you find a patient organisation locally which may have more information about a specific rare disease or disorder. Find their contact information on the bottom of this page.
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].