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To fight the prejudices that people living with a rare disease have to face, ALAN and its partners have launched a new communication campaign in September 2022. The slightly provocative message of the original song “Meet Me If You Dare” and the campaign’s Instagram Reels and TikToks encourages open-mindedness while raising the awareness for rare diseases and their impact on the lives of those affected. .

In 2021, ALAN supported 562 patients and families affected by a rare disease, representing 241 different diseases. The activity report, presented at the recent general assembly, shows that the number of psycho-social consultations carried out by the ALAN team increased by 40% in 2021 compared to the previous year...

Our offices, including the Infoline Maladies Rares Luxembourg, will be closed from the 20th of December 2021 to the 2nd of January 2022. We wish our whole community serene holidays among their loved ones and a happy New Year.

On Thursday, the 14th of October 2021, the inauguration of ALAN's new offices was celebrated in the presence of the mayor of Roeser, Tom Jungen, and the president of the health commission, Mars Di Bartolomeo. The organisation, which supports families affected by a rare disease, moved to Kockelscheuer, into the new, modern building of the engineering firm Schroeder & Associés S.A., in response to the consistent increase in requests for support and expansion of its activities.

“A true superhero’s power is invisible. Just like many rare diseases.” with this tagline, the non-profit organisations ALAN Maladies Rares Luxembourg and EDS Lëtzebuerg are launching their online awareness campaign “Invisible Heroes” in September 2021. The goal of the campaign is to fight prejudices and increase the public’s understanding of rare and invisible diseases.

In 2020, ALAN supported more than 400 patients and families affected by a rare disease, many of whom are particularly vulnerable to COVID-19. In addition to its psycho-social consultation services and adapted physical activities, ALAN primarily focused its efforts on national and international advocacy, awareness-raising and patient empowerment.