This year, ALAN celebrates its 25th anniversary. To celebrate this milestone, the association organized an academic session at the “Kinneksbond” Cultural Center in Mamer, on the 20th of September 2023 in the presence of HRH the Grand Duchess. The academic session marked the publication of the children's book “Toni Konfettoni” by the writer and president of ALAN, Anja Di Bartolomeo and the illustrator, Snejana Granatkina, and published by Éditions Guy Binsfeld.

The EURORDIS Rare Barometer survey on the diagnostic odyssey of rare disease patients shows, among other things, that in Luxembourg: • it takes 5 years on average between the appearance of first symptoms to the the confirmation of the diagnosis. • > 60% of people with a rare disease consulted 5 or more health professionals during their journey to receive a diagnosi • > 60% of people with a rare disaease experienced a delay in access to appropriate care/treatment following a diagnostic error...

In 2022, ALAN received almost 700 requests for support from people affected by a rare disease, representing around 300 different diseases. The annual report, presented at the recent General Assembly, shows that in 2022 the association has also considerably strengthened its mandate as the National Alliance for Rare Diseases through multiple advocacy actions, such as the call for a second National Plan for Rare Diseases. This year, the General Assembly was marked by a key moment for the association: Shirley Feider-Rohen, president of ALAN since 2013, passed the torch of the presidency to Anja Di Bartolomeo.