News

The latest updates for the Luxembourg rare disease community

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.

New location & new website

ALAN marks the start of the new year with two milestones. The non-profit organisation, which supports families affected by a rare disease, is moving from Bascharage to Kockelscheuer, into the new, modern building of the engineering firm Schroeder & Associés SA.

Annual Report 2019

In 2019, ALAN supported nearly 400 patients and families affected by a rare disease, which represents more than 200 different diseases. The number of psychosocial consultations carried out by the multidisciplinary team in 2019 increased by 40% compared to the previous year.

Government’s response to our open letter

At the end of March, ALAN and a number of other association sent a joint open letter to the government to draw their attention to specific issues caused by the COVID-19 pandemic for families, where one person lives with a rare or severe chronic disease. Below you can find the Ministers’ response as well as our position statement to their response.

Subscribe to our newsletter to stay up to date

Font Resize
Contrast
X