On Saturday 27 February 2016, the ALAN-Maladies Rares Luxembourg association and the Luxembourg Institute of Health (LIH) will be holding an evening quiz to help raise awareness of rare diseases and help the voices of those affected heard within the context of Rare Disease Day 2016.

ALAN, which was founded in 1998 as an organisation to recognise and support those affected by neuromuscular and rare diseases, has joined forces with the LIH for the second consecutive year to spread information on the subject, who have received additional support for this edition from the Mamer 'Jonk Fuerscher Lëtzebuerg' youth centre and 'Krunnemécken'.

The evening will be hosted by Geert van Beusekom, head of the Mamer youth centre and 'Mister Science' aka Joseph Rodesch at the festival hall of the Château de Mamer, with music provided by 'Krunnemécken'. Dr. Yolande Wagener of the Ministry of Health and ALAN President Shirley Feider will speak before the quiz officially begins.

The evening will aim to revive the spirit of last year's edition, with a friendly atmosphere, special food and prices and teams of eight people competing against one another by testing their knowledge on the subject of rare diseases, general science and more. The 2016 event will be held under the theme 'Help us to Make the Voice of Rare Diseases Heard'.

The European Union refers to a disease as 'rare' when it affects fewer than 5 in 10,000 people. Their rarity often means that the medical, psychological and social care given for these diseases is uncertain, although the term 'rare' now covers between 6,000 and 8,000 diseases in the world, with 30 million people affected in the EU, corresponding to about 6% of the population. In a small country like Luxembourg, it could be that a person with a certain rare disease is the only individual to be affected in the Grand Duchy.

Luxembourg's Ministry of Health has previously been vocal on the topic, having joined a Belgian-Dutch collaboration to negotiate with pharmaceutical companies to restrain drug prices for orphan diseases and having lobbied for patients with rare diseases to receive more attention.

The quiz intends to combine advocacy and entertainment, with the main priority being to echo the 2016 theme of 'The Patient Voice'. The evening will begin at 18:00.

Photo by Rare Disease Day ® 2016. Video from YouTube/rarediseaseday