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Carpet of edelweiss in Galeries work of rare disease association
Anyone who wandered through the Galeries Saint-Hubert in the centre of Brussels at the weekend couldn’t have missed the striking white carpets completely constructed of origami edelweiss. The installation was created by volunteers with RaDiOrg, a Belgian non-profit dedicated to rare diseases.
RaDiOrg is an umbrella organisation representing more than 80 associations dedicated to specific rare diseases as well as represents people with diseases where no association exists. Volunteers spent months making the 10,000 edelweiss blooms out of paper.
They were put in place on the floor of the Galeries by volunteers and members of the organisation in honour of the global Rare Disease Day, recognised every year on the last day of February. “The edelweiss is a symbol of rarity to us,” RaDiOrg co-ordinator Eva Schoeters explained to Bruzz. “We are laying this gigantic carpet to show that, while we are rare, there are many, many of us.”
The organisation wants the public to be aware of the problems facing those with rare diseases and make the point that their voices are not enough heard in the creation of public policy – or in getting a diagnosis. “We want to introduce the concept to everyone – also to family doctors and to specialists – so that there can be an immediate reflex to consider a rare disease when strange or vague complaints come together. We’re hoping to make the path easier for patients to get the right referral and the right tests.”
Photo courtesy RaDiOrg/Facebook