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

Image2

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

Image2

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.

Image2
A rewarding experience

Become a volunteer

Find out how
Image2
Join our community

Become a member

Find out how
Image2
Every donation counts

Make a donation

Find out how

Latest news

ALAN’s 25th anniversary: academic session, children’s book & advocacy campaign

This year, ALAN celebrates its 25th anniversary. To celebrate this milestone, the association organized an academic session at the “Kinneksbond” Cultural Center in Mamer, on the 20th of September 2023 in the presence of HRH the Grand Duchess. The academic session marked the publication of the children's book “Toni Konfettoni” by the writer and president of ALAN, Anja Di Bartolomeo and the illustrator, Snejana Granatkina, and published by Éditions Guy Binsfeld.

Results from the Rare Barometer survey on the diagnostic odyssey

The EURORDIS Rare Barometer survey on the diagnostic odyssey of rare disease patients shows, among other things, that in Luxembourg: • it takes 5 years on average between the appearance of first symptoms to the the confirmation of the diagnosis. • > 60% of people with a rare disease consulted 5 or more health professionals during their journey to receive a diagnosi • > 60% of people with a rare disaease experienced a delay in access to appropriate care/treatment following a diagnostic error...

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.

Latest events

december

No Events

Get in touch if you have questions or need support