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ALAN receives European award for its commitment

12 August 2020
ALAN’s 25th anniversary: academic session, children’s book & advocacy campaign

21 September 2023
ALAN’s psycho-social consultation service is recognized by the European Commission

7 March 2024

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28 September 2026
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ALAN – Maladies Rares Luxembourg is a non-profit association (association sans but lucratif – a.s.b.l) founded in 1998 and declared of public utility in 2000.
It is ALAN’s mission to improve the quality of life of individuals who are affected by a rare disease.

ALAN is supported by the Ministry of Health and Social Security, AFM-Téléthon and generous donors.

Reconnue d’utilité publique par arrêté grand-ducal du 29 avril 2000Registre de commerce : F 22 42Agréments : SANTE 2021/19 et 2020/02

(+352) 266 112 - 1info@alan.lu

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A few highlights from our Family Day at @kantindud

A few highlights from our Family Day at @kantindudelange

The weather was fantastic, the food was excellent, and the good spirits could be felt throughout the day.

A huge thank you to everyone who helped make this day possible, especially Henri Goergen, the KANTIN team, and Fili for the wonderful Djembe workshop, where everyone had the chance to try something new and make music together🥁

📸 The full album is available here:
https://www.flickr.com/photos/190216581@N05/albums/72177720334539035/

© Henri Goergen / ALAN

Discover our new Resource Centre with thematic inf

Discover our new Resource Centre with thematic information sheets, videos, and practical tools !

• What kind of support can my child with a rare disease receive at school?
• How do I organize treatment abroad?
• How does a clinical trial work?
• How can my work be adapted if I can no longer work as much due to rare disease ?
• How can I better cope with my chronic pain?

Find answers to these and many other questions on our website (link in bio)

Our 2025 Annual Report has been published 📖 The

Our 2025 Annual Report has been published 📖

The numbers show that the need for support for people living with a rare disease continues to increase : last year, we reached a new record with 752 requests for support. Over the past five years, this number has almost doubled. This clearly shows that psychosocial support is essential and must be further expanded in Luxembourg.
In a year marked by the launch of the 2nd National Plan for Rare Diseases, we have further strengthened our missions of providing support, information, and advocacy at both the national and international levels.

The link to the full report is in our bio

It was a pleasure to reconnect with so many of our

It was a pleasure to reconnect with so many of our members and volunteers at this year’s General Assembly

We have the great privilege of welcoming Britta Schlüter to our Board of Directors, who brings not only her dedication to the rare disease community, but also many years of experience in the fields of communication and public relations.

At the same time, it was with a heavy heart that we said goodbye to Fons Ansay, who, after many years of dedicated service, has stepped down from our Board.

You can find the complete photo album on www.flickr.com/photos/190216581@N05/
(c) Henri Goergen/ALAN

“D’Schwäert an d’Sail” by Hannah Hommel For the

“D’Schwäert an d’Sail” by Hannah Hommel

For the Rare Voices project, Hannah who lives with a rare disease, wrote and presented this short story on the topic of resilience.

The 28th of February 2026 was Rare Disease Day, the day of the year when we raise awareness for rare diseases and celebrate our community.

🇫🇷
Pour le projet Rare Voices, Hannah, qui vit avec une maladie rare, a écrit et présenté cette nouvelle sur le thème de la résilience.

Le 28 février 2026 a eu lieu le 19e Rare Disease Day, le jour de l’année où nous sensibilisons aux maladies rares et célébrons notre communauté.

🇱🇺
Fir de Rare Voices Projet huet d’Hannah, wat mat enger rarer Krankheet lieft, dës Kuerzgeschicht iwwer d’Thema Resilienz geschriwwen a presentéiert.

Den 28 Februar 2026 ass de Rare Disease Day, deen Dag am Joer wou mir iwwert rar Krankheete sensibiliséieren an eis Communautéit feieren.
-—————————
www.alan.lu/rarediseaseday2026/
#RareDiseaseDay #RareVoices #Letzebuerg #maladierare #seltenekrankheit

Music by Alex Grohl (Pixabay)

“Robby, den zaarte Paiperlék” a children’s story b

“Robby, den zaarte Paiperlék” a children’s story by Carine Hentz

For the Rare Voices project, Carine, whose child lives with a rare skin disease called Epidermolysis bullosa, wrote and presented this children’s story.

The 28th of February 2026 was Rare Disease Day, the day of the year when we raise awareness for rare diseases and celebrate our community.

🇫🇷
Pour le projet Rare Voices, Carine, mère d’un enfant atteint d’épidermolyse bulleuse, une maladie dermatologique rare, a écrit et présenté cette histoire pour enfants.

Le 28 février 2026 a eu lieu le 19e Rare Disease Day, le jour de l’année où nous sensibilisons aux maladies rares et célébrons notre communauté.

🇱🇺
Fir de Rare Voices Projet huet d’Carine, wat Mamm vun engem Kand mat der seelener Hauterkrankung Epidermolysis bullosa ass, dës Kannergeschicht geschriwwen a presentéiert.

Den 28 Februar 2026 ass de Rare Disease Day, deen Dag am Joer wou mir iwwert rar Krankheete sensibiliséieren an eis Communautéit feieren.
-—————————
www.alan.lu/rarediseaseday2026/
#RareDiseaseDay #RareVoices #Letzebuerg #maladierare #seltenekrankheit

Music by Alex Grohl (Pixabay)

“Résilience” by Jean-Francis Covi from @alsr.lu

“Résilience” by Jean-Francis Covi from @alsr.lu

🇬🇧
For the Rare Voices project, Jean-Francis, whose daughter lives with Rett Syndrome, wrote and presented this poem.

The 28th of February 2026 was Rare Disease Day, the day of the year when we raise awareness for rare diseases and celebrate our community.

🇫🇷
Pour le projet Rare Voices, Jean-Francis, qui a une fille atteinte du sydrome de Rett, a écrit et présenté ce poème.

Le 28 février 2026 a eu lieu le 19e Rare Disease Day, le jour de l’année où nous sensibilisons aux maladies rares et célébrons notre communauté.

🇱🇺
Fir de Rare Voices Projet huet de Jean-Francis, deem säi Meedchen mat Rett-Syndrom lieft, dëst Gedicht geschriwwen a presentéiert.

Den 28 Februar 2026 ass de Rare Disease Day, deen Dag am Joer wou mir iwwert rar Krankheete sensibiliséieren an eis Communautéit feieren.
-—————————
www.alan.lu/rarediseaseday2026/
#RareDiseaseDay #RareVoices #Letzebuerg #maladierare #seltenekrankheit

Music by Alex Grohl (Pixabay)

-—————————

“How long has it been?” by @bennyj_artist 🇬🇧 For

“How long has it been?” by @bennyj_artist
🇬🇧
For the Rare Voices project, Benny who lives with a rare disease, wrote and presented this poem on the topic of resilience.

The 28th of February 2026 was Rare Disease Day, the day of the year when we raise awareness for rare diseases and celebrate our community.

🇫🇷
Pour le projet Rare Voices, Benny, qui vit avec une maladie rare, a écrit et présenté ce poème sur le thème de la résilience.

Le 28 février 2026 a eu lieu le 19e Rare Disease Day, le jour de l’année où nous sensibilisons aux maladies rares et célébrons notre communauté.

🇱🇺
Fir de Rare Voices Projet huet de Benny, dee wat mat enger rarer Krankheet lieft, dëst Gedicht iwwer d’Thema Resilienz geschriwwen a presentéiert.

Den 28 Februar 2026 ass de Rare Disease Day, deen Dag am Joer wou mir iwwert rar Krankheete sensibiliséieren an eis Communautéit feieren.
-—————————
www.alan.lu/rarediseaseday2026/
#RareDiseaseDay #RareVoices #Letzebuerg #maladierare #seltenekrankheit

Music by Alex Grohl (Pixabay)

“Dear Darcie” by Corinne Thill, inspired by @darci

“Dear Darcie” by Corinne Thill, inspired by @darcies_story

🇬🇧
For the Rare Voices project, Corinne, who is a psychotherapist for people with a rare disease, wrote and presented this poem on the topic of resilience.

The 28th of February 2026 is Rare Disease Day, the day of the year when we raise awareness for rare diseases and celebrate our community.

🇫🇷
Pour le projet Rare Voices, Corinne, qui encadre des personnes concernées par une maladie rare, a écrit et présenté ce poème sur le thème de la résilience.

Le 28 février 2026 a eu lieu le 19e Rare Disease Day, le jour de l’année où nous sensibilisons aux maladies rares et célébrons notre communauté.

🇱🇺
Fir de Rare Voices Projet huet d’Corinne, wat Psychotherapeutin fir Mënsche mat enger rarer Krankheet ass, dëst Gedicht iwwer d’Thema Resilienz geschriwwen a presentéiert.

Den 28 Februar 2026 war de Rare Disease Day, deen Dag am Joer wou mir iwwert rar Krankheete sensibiliséieren an eis Communautéit feieren.
-—————————
www.alan.lu/rarediseaseday2026/
#RareDiseaseDay #RareVoices #Letzebuerg #maladierare #seltenekrankheit

Music by Alex Grohl (Pixabay)

——————————

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