News

In early October 2024, ALAN launched a new interactive awareness campaign with the support of its partners.The campaign aims to increase the general public’s awareness for rare diseases, and the impact these diseases have on everyday life, with a special focus on the multifaceted complexity of the path that the affected people have to walk...

D’a.s.b.l. ALAN – Maladies Rares Luxembourg sicht, fir ee Congé de maternité/parental ze ersetzen, een diploméierte Psycholog/ Psychotherapeut (m/w)

Pour remplacer un congé de maternité/parental l’a.s.b.l. ALAN recherche un Chargé de mission affaires publiques/Coordinateur d’alliance (m/f)

In 2023, ALAN - Maladies Rares Luxembourg, the non-profit organisation and national alliance representing people affected by a rare disease in Luxembourg, celebrated its 25th anniversary. In this historic year for the association, its consultation service, which was recently recognized by the European Commission, supported 669 people and families affected by a rare disease, representing 263 different diseases.

In February 2024, the consultation service of ALAN Maladies Rares Luxembourg received the “EU-Promising Practice in the field of Mental Health” label in recognition of its holistic approach to psycho-social support for individuals and families affected by a rare disease.

D’a.s.b.l. ALAN – Maladies Rares Luxembourg sicht, fir säin Team ze verstäerken, een diploméierte Psycholog/ Psychotherapeut (m/w)

Our offices, including the Infoline Maladies Rares Luxembourg, will be closed from the 23th of December 2023 to the 2nd of January 204. We wish our whole community serene holidays among their loved ones and a happy New Year.

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...