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À propos d’ALAN
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Nous soutenir Se connecter

Accueil
Maladies rares
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À propos d’ALAN
Contactez-nous
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À propos d’ALAN

ALAN – Maladies Rares Luxembourg est une association sans but lucratif (a.s.b.l.) fondée en 1998 et reconnue d’utilité publique depuis 2000.

La mission d’ALAN consiste à améliorer la qualité de vie des personnes et des familles touchées par une maladie rare.

ALAN est soutenu par le ministère de la Santé et de la Sécurité, AFM-Téléthon et des généreux donateurs.

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

Parc Luxite
13, rue de l'Innovation
L-1896 Kockelscheuer

CCPL LU95 1111 0004 2638 0000
BCEE LU89 0019 1300 5184 5000
BLUX LU30 0080 3239 1490 2001

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Our 2024 Annual Report has been published -> link

Our 2024 Annual Report has been published
-> link in bio

The strong demand for support in 2024 underlines the importance of the 2nd National Plan for Rare Diseases !!

The Annual Report shows that in 2024, our psychosocial consultation service received 699 requests for support – a record for ALAN. Thus, we continued our support, patient empowerment, and advocacy efforts, particularly in light of the launch of the 2nd National Rare Disease Plan.

We were delighted to catch up with many of our mem

We were delighted to catch up with many of our members, volunteers and friends at our general assembly. A big thank you to the Mamer Council, for their support with the event organisation.

It is also our great pleasure to officially welcome Britta Schlüter as an active member of ALAN, and Christian Erang, representative of @den_i.lu , as the newest member of the Board of Directors of ALAN.

Photos (c) Henri Goergen/ALAN

Order your t-shirt by artist @yanntoss to support

Order your t-shirt by artist @yanntoss to support rare diseases!

The “Daily Distortion” project is a collaboration between the artist Yannick Tossing and ALAN aiming
to raise awareness for rare diseases, with a focus on Huntington’s disease which is the artist’s source of inspiration. The ethical and eco-friendly t-shirts, designed by Yannick Tossing, are produced by the Foundation Kräizbierg. The illustrations symbolize the impact a rare disease has on everyday life and the distortion of what is considered to be “normal”. The net profits from the project go to ALAN.

You can pre-order the t-shirts until the 31st of March on www.yannicktossing.com/daily-distortion

- choose 1 of 4 illustrations and your size
- fill in a short order form (https://bit.ly/alan-tshirts)
- pay via Payconiq or bank transfer
- we aim to have the t-shirts delivered to you by the end of April

On Friday we didn’t just celebrate Rare Disease

On Friday we didn’t just celebrate Rare Disease Day, but also the launch of our new project with artist Yannick Tossing.

We want to thank our Minister of Health, @deprez_martine_ , @yanntoss, @fondation_kraizbierg, @schroeder.associes , Henri Goergen, and all our friends and partners who once again emphasized their support for our community.

We will share the details about the project in a separate post, but those who are already curious can find information on Yannick’s website: www.yannicktossing.com/daily-distortion

Photos (c) ALAN/Henri Goergen

In Luxembourg, children living with a heart diseas

In Luxembourg, children living with a heart disease are supported by ALAN and our partner, the Association Luxembourgeoise d’Aide aux Enfants Cardiaques (ALAEC)

For more information about the association’s missions and activities visit: https://www.alaec.lu/

#RareDiseaseDay #congenitalheartdisease #congenitalheartdefect

There are over 6000 different rare diseases that c

There are over 6000 different rare diseases that can affect every bodily function or organ. This month we will highlight some of these diseases on our social media to show their diversity.
For more information about rare diseases and the support we offer to those affected, please visit our website www.alan.lu
#RareDiseaseDay #myotonicdystrophy

What is it like to live with a rare disease? More

What is it like to live with a rare disease?
More information about Rare Disease Day -> https://alan.lu/rarediseaseday
#RareDiseaseDay #raredisease #maladierare #seltenekrankheit #chronicillness #spoonie #invisibledisability

In the spirit of raising awareness for #RareDiseas

In the spirit of raising awareness for #RareDiseaseDay, here are some facts about rare diseases:

• A disease is considered “rare” if it affects less than 1 person in 2000

• In Luxembourg around 30,000 people are affected by a rare disease

• More than 6000 different rare diseases have been identified

• 72% of rare diseases are genetic

• People with a rare disease have to wait 5 years on average to receive the correct diagnosis

• 95% of rare diseases have no effective treatment

• 70% of rare genetic diseases start in childhood

In Luxembourg, people affected by ALS are supporte

In Luxembourg, people affected by ALS are supported by ALAN and our partners from the association Waertvollt Liewen
For more information about the association’s missions and activities visit: https://www.waertvollt-liewen.lu/de/
#RareDiseaseDay #als #sla

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