What is a rare disease?

A disease is classified as “rare” if it affects less than 1 in 2000 people.

There are over 6000 different rare diseases. Many of them are of genetic origin, chronic and progressive. Rare diseases impact quality of life and can reduce life expectancy.

30000

people concerned in Luxembourg

70

% start in childhood

6000

identified rare disease

5

years to get a correct diagnosis

30000 people in Luxembourg3 diseases are pediatric onset7000 identified rare diseases
5 years to get a correct diagnosis

Our services

Consultations

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Our social workers and psychologists provide free administrative and social support, as well as psychological counselling, to individuals and families affected by a rare disease.

Recreational activities

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We offer adapted physical activities, such as relaxation courses, yoga, aqua gymnastics or horse therapy, to our members to boost their well-being, confidence and self-esteem.

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Choose your way to support our association!

Together, we can make a difference.

We are able to offer our services thanks to the generosity and commitment of numerous individuals and organizations. Every gesture of support contributes to improving the quality of life of children and adults living with a rare disease.

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A rewarding experience

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Join our community

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Every donation counts

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Latest news

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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