Rare Disease Day Discover the Rare Disease Day campaign, including the Global Chain of Lights Learn more Rare Disease Day Rare Disease Day
ALAN - we
care 4 rare!
At ALAN - we aim to improve the quality of life of individuals and families affected by rare diseases in Luxembourg. Discover more
ALAN - we
care 4 rare!
ALAN - we
care 4 rare!
Join our
community
Become a member of ALAN and join the community of rare disease patients, families and friends, legal entities, volunteers and stakeholders. Discover more
Join our
community
Join our
community
Rare Disease
Guide
The “Guide d'orientation luxembourgeois pour les personnes vivant avec une maladie rare” provides information on all available services and guides you through procedures. Read guide
Rare Disease
Guide
Rare Disease
Guide
Téléthon
Luxembourg
The Téléthon Luxembourg raises funds to support research into rare diseases and psycho-social support for people living with a rare disease. Discover more
Téléthon
Luxembourg
Téléthon
Luxembourg

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.

Get involved

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

Become a volunteer

Find out how
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Join our community

Become a member

Find out how
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Every donation counts

Make a donation

Find out how

Latest news

Rare Disease Day 2026

On the 28th of February 2026 we celebrate the 19th Rare Disease Day, a day dedicated to raising awareness about rare diseases and their impact on the lives of those affected, including approximately 30,000 people in Luxembourg. As every year, ALAN Maladies Rares Luxembourg, the non-profit organisation and national alliance representing people affected by a rare disease in the Grand Duchy, will launch several actions to increase awareness and understanding for these diseases, most of which are chronic, progressive and incurable.

The “24 hours” awareness campaign

In September 2025, the association and national alliance representing people affected by a rare disease in Luxembourg ALAN – Maladies Rares Luxembourg, launched a new online awareness campaign with the support of their non-profit partners, Association Luxembourgeoise du Syndrome de Rett (ALSR) and EDS Lëtzebuerg. The campaign aims to increase the general public’s awareness for rare diseases, and their impact by showing 24 hours in the daily lives of 6 children and adults living with a rare disease....

Latest events

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