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

General Assembly: annual report & new president

In 2022, ALAN received almost 700 requests for support from people affected by a rare disease, representing around 300 different diseases. The annual report, presented at the recent General Assembly, shows that in 2022 the association has also considerably strengthened its mandate as the National Alliance for Rare Diseases through multiple advocacy actions, such as the call for a second National Plan for Rare Diseases. This year, the General Assembly was marked by a key moment for the association: Shirley Feider-Rohen, president of ALAN since 2013, passed the torch of the presidency to Anja Di Bartolomeo.

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.

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