Rare Disease Day 2025

On the 28th of February 2025 we celebrate the 18th Rare Disease Day, a day dedicated to raising awareness about rare diseases and their impact on the lives of those affected, including approximately 30,000 people in Luxembourg.

As every year, ALAN Maladies Rares Luxembourg, the non-profit organisation and national alliance representing people affected by a rare disease in the Grand Duchy, will launch several actions to increase awareness and understanding for these diseases, most of which are chronic, progressive and incurable.

A big THANK YOU to all our partners who supported our awareness-raising campaign for Rare Disease Day 2025!

For Rare Disease Day ALAN and the artist Yannick Tossing have collaborated on a new project called “Daily Distortion”. The launch of the project will be celebrated with a reception and an exhibition of M Tossing’s sculptures, which symbolize the impact a rare disease has on a person’s daily life and the distortion of what is considered to be “normal”. This reception will take place on the 28^th of February, 2025 in the presence of the Minister of Health and Social Security, Martine Deprez.

For the “Daily Distortion” project, ethical and eco-responsible t-shirts, created by Yannick Tossing and produced by the Fondation Kräizbierg, will be sold to raise awareness for rare diseases, with a focus on Huntington’s disease, which is the artist’s source of inspiration. The visuals on the t-shirts are illustrations inspired by sculptures of M Tossing, who has experienced the impact of this neurodegenerative disease in his own family. The illustrations represent the challenge of using everyday objects when parts of these objects are deformed. In addition, the aspect of deformation draws parallels with genetic mutations, which are at the origin of many rare diseases.

You can pre-order the t-shirts from the 28^th of February 2025 onwards.

As in previous years, a highlight of Rare Disease Day is the “Global Chain of Lights” – the illumination of public, or iconic buildings and monuments around the world in the Rare Disease Day colours. The purpose of this illumination is to break the isolation of people affected by a rare disease, to express our solidarity and to raise awareness.

For the “Global Chain of Lights” in Luxembourg, many prestigious buildings are illuminated in blue, pink, green and purple throughout the last week of February 2025, including: