The latest updates for the Luxembourg rare disease community

Rare diseases in Luxembourg: a crucial public health issue and a pressing socio-political decision

For Rare Disease Day 2023, the national alliance representing people affected by a rare disease in Luxembourg, ALAN – Maladies Rares Luxembourg, has published a position paper with its partners. Together, they call for rare diseases to be identified as one of the public health priorities in Luxembourg and for the second National Rare Diseases Plan (Plan National Maladies Rares - PNMR) to be adopted from the beginning of 2024. The position paper is supported by an online communication campaign and events that aim to raise awareness about rare diseases.

The “Talk TO me, not ABOUT me” awareness campaign

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. .

Annual Report 2021

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...

Inauguration of ALAN’s new offices

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.

Campaign to raise awareness for rare, invisible diseases

“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.

Survey results: COVID-19 vaccination of people with rare diseases

ALAN wanted to better understand how people with a rare disease view the COVID-19 vaccination as well as the effectiveness of the strategy for vulnerable individuals. To this end, ALAN ran an anonymous survey amongst the members of the association and the rare disease community in Luxembourg. The results of this survey have now been published.

Annual Report 2020

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.

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