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Accueil
Maladies rares
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À propos d’ALAN
Contactez-nous

Nous soutenir Connexion

Accueil
Maladies rares
Nos services
Actualités & événements
À propos d’ALAN
Contactez-nous
Nous soutenir
Connexion
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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, 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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Last year, we supported 562 patients and families.

Last year, we supported 562 patients and families. This represents 241 different rare diseases and is an increase of 40% compared to 2020.

Our 2021 Annual Report has been published and was presented at our recent General Assembly!

Why did we see this increase in the number of requests for support? What else did ALAN focus on in 2021? Who are the new members of our Board of Directors?

Find out in our latest article:
https://alan.lu/annual-report-2021/

The full Annual Report (in French) is available here : https://alan.lu/about-us/publications/

#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#counseling
#counselling
#psychotherapy
#socialworker
#socialsupport
#spoonielife
#chronicillnesssupport
#chronicillnesslife
#disabilityadvocate
#careaboutrare
#maladieinvisible
#lebenmitbehinderung
#luxemburg
#luxemburgo
#benevolat
#specialneedschildren
#tousensemble
#inclusion

With the amount of support, solidarity and encoura

With the amount of support, solidarity and encouragement that we have seen throughout the last month, there is only one thing left to say: THANK YOU 💚💗💙💜

- to our partners who illuminated their buildings for the Global Chain of Lights
- to the Ministry of Health and the @chdn_lux for the great collaboration on this campaign
- to the associations, councils and other partners who have shared material on social media to raise awareness about rare diseases
- to @sophiemarguephotography , @cflinfos and @bcee_spuerkeess , who made our «RaReflections» photo expo a reality
- to all the wonderful people that opened up and became part of our photo exhibition or gave testimonials about their lives with a rare disease
- to the Luxembourgish journalists and media outlets who supported our community
- to everyone who participated in our campaign by liking, sharing or commenting on our posts

Each and every one of you has helped raise awareness about rare diseases and amplify the voice of our community. 📢

We are already looking forward to next year

#rarediseaseday
#globalchainoflights
#lightupforrare
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#patientempowerment
#patientadvocacy
#patienteducation
#patientadvocate
#spooniecommunity
#chronicillnesscommunity
#awareness

A warm atmosphere, emotional moments and inspirati

A warm atmosphere, emotional moments and inspirational messages – that about sums up the opening of our “RaReflections” photo exhibition in collaboration with @sophiemarguephotography yesterday at the Luxembourg City Central Train Station.

The exhibition is shown at the train station until the end of March, so go and have a look around - it's worth it 😊

A big thank you to our partner @cflinfos who have wholeheartedly supported us in every aspect of this project.

A big thank you also to the sponsor of the project, the @bcee_spuerkeess, and our partners from the @villedeluxembourg and the @sante.lu who support us time and time again.

And last but not least, many thanks to @henrigoergen, who captured this wonderful event for us on camera.

The complete gallery with all the pictures from the opening is available on: https://alan.lu/fr/galerie/rareflections-vernissage/

© ALAN / Henri Goergen

#rarediseaseday
#rareflections
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#patientempowerment
#patientadvocacy
#patienteducation
#patientadvocate
#healthcareeducation
#advocacy
#specialneeds
#nonprofit
#nonprofitorganization
#chronicillnesswarrior
#raiseawareness
#chronicillnessawareness
#spoonie
#spooniecommunity
#chronicillnesscommunity
#geneticdisease
#awareness
#inclusive

Together we are stronger! That’s why, this mont

Together we are stronger!

That’s why, this month, we will introduce you to several of our partners – Luxembourg-based patient associations that are also working in the field of rare diseases and support people affected by a specific rare disease, or group of rare diseases.

Today we want you to get to know @den_i.lu

den-i a.s.b.l. s’engage à :

- Information -
Informer sur le syndrome de Marfan

- Sensibilisation -
Sensibiliser le grand public

- Soutien -
Soutenir les personnes concernées

To learn more about den-I asbl visit: https://den-i.lu/

And don’t forget to follow @den_i.lu

#rarediseaseday
#strongertogether
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#marfansyndrome
#patientempowerment
#patientadvocacy
#patienteducation
#patientadvocate
#healthcareeducation
#advocacy
#nonprofit
#nonprofitorganization
#raiseawareness
#chronicillnessawareness
#spooniecommunity
#chronicillnesscommunity
#awareness

One of the highlights of Rare Disease Day is the G

One of the highlights of Rare Disease Day is the Global Chain of Lights – the illumination of public and symbolic buildings around the world in the colours of Rare Disease Day, during the last week of February and the first week of March.

Luxembourg is of course part of this global chain and we are thrilled that so many councils, institutions and companies are participating this year, thereby sending a strong message of solidarity with our community. A huge thank you to all our partners for their support.

In Luxembourg, buildings in Luxembourg City, Contern, Esch, Grevenmacher, Larochette, Mersch, Mondorf, Sanem, Schengen, Steinfort, Wiltz and more, will be illuminated in purple, pink, green and blue.

The complete and up-to-date list, as well as all other important information about Rare Disease Day, is available at : https://alan.lu/rare-disease-day/

#globalchainoflights
#lightupforrare
#rarediseaseday
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#patientempowerment
#patientadvocacy
#patienteducation
#patientadvocate
#spooniecommunity
#chronicillnesscommunity
#awareness

Together we are stronger! That’s why, this mont

Together we are stronger!

That’s why, this month, we will introduce you to several of our partners – Luxembourg-based patient associations that are also working in the field of rare diseases and support people affected by a specific rare disease, or group of rare diseases.

Today we want you to get to know the “Fondatioun Kriibskrank Kanner”.

The Fondatioun Kriibskrank Kanner provides day-to-day support to families of children and adolescents with cancer or other rare and life-threatening diseases. Its multi-disciplinary team offers individual support from the time of diagnosis until the child's remission and provides administrative and financial services, psychological and social support as well as educational and recreational activities. In addition, the foundation undertakes awareness campaigns and participates in the improvement of the condition of the sick child. Finally, it actively supports paediatric oncology research with one goal: to treat better and cure more.

To learn more about the Fondatioun Kriibskrank Kanner visit: https://fondatioun.lu/

And don’t forget to follow @letz_go_gold

#rarediseaseday
#strongertogether
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#pediatriccancer
#patientempowerment
#patientadvocacy
#patienteducation
#patientadvocate
#healthcareeducation
#advocacy
#nonprofit
#nonprofitorganization
#raiseawareness
#chronicillnessawareness
#spooniecommunity
#chronicillnesscommunity
#awareness

“Just like Martin Luther King, I have a dream:

“Just like Martin Luther King, I have a dream:

I dream of a society,
• where people with special needs, receive the required assistance, without having to struggle for it,
• where respect, tolerance and honesty will govern the way we interact with each other,
• … “

- Nathalie –

Nathalie lives with a rare disease and was photographed by the talented @sophiemarguephotography as part of our RaReflections photo exhibition

©ALAN/ Sophie Margue

#rareflections
#rarediseaseday
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#patientempowerment
#patientadvocacy
#patienteducation
#patientadvocate
#spooniecommunity
#spoonie
#chronicillnesscommunity
#awareness

“Having a disability is never easy, not for your

“Having a disability is never easy, not for yourself, nor for your close ones. I just hope others are as lucky as I am: having friends to be silly with and a supportive family. The wheelchair is only as fast as the engine that’s behind it.”

„Eng Behënnerung ze hunn ass ni einfach fir ee selwer oder säin Ëmfeld. Ech hoffen einfach dass anerer genau esou vill Chance wäerten hunn wéi ech! Kolleege fir ronderëm ze blödelen an eng Famill wou een ënnerstëtzt. De Rollstull rullt halt just sou séier wéi de Moto deen hannendrunnersteet.”

- Laurent –

Laurent lives with a rare disease and was photographed by the talented @sophiemarguephotography as part of our RaReflections photo exhibition

©ALAN/ Sophie Margue

#rareflections
#rarediseaseday
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#patientempowerment
#patientadvocacy
#patienteducation
#patientadvocate
#spooniecommunity
#spoonie
#chronicillnesscommunity
#awareness

“Anyone has the right to decide who or what you

“Anyone has the right to decide who or what you will become - It's your choice.
It isn't a shame to have scars, they just show how strong you are - They won't stop me, they give me my (heart)beat.”

- Sam –

Sam lives with a rare disease and was photographed by the talented @sophiemarguephotography as part of our RaReflections photo exhibition

©ALAN/ Sophie Margue

#rareflections
#rarediseaseday
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#patientempowerment
#patientadvocacy
#patienteducation
#patientadvocate
#spooniecommunity
#spoonie
#chronicillnesscommunity
#awareness

© 2021 ALAN. Mentions légales

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