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Rare Disease Day 2025

26 Februar 2025
Die Sensibilisierungskampagne “Rare Rewind”

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Stellenangebot: Psychologe

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Über Uns

ALAN – Maladies Rares Luxembourg ist eine gemeinnützige Vereinigung (association sans but lucratif – a.s.b.l) welche 1998 gegründet wurde und seit 2000 offiziell als gemeinnützig anerkannt ist.

ALAN’s Mission besteht darin die Lebensqualität von Menschen und Familien, die von einer seltenen Erkrankung betroffenen sind, zu verbessern.

ALAN wird vom Ministerium für Gesundheit und soziale Sicherheit, AFM-Téléthon und großzügigen Spendern unterstützt.

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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13, rue de l'Innovation
L-1896 Kockelscheuer

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BLUX LU30 0080 3239 1490 2001

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Dear friends, As this year draws to an end, the

Dear friends,

As this year draws to an end, the Board of Directors and the team of ALAN wishes you happy and serene holidays among your loved ones, as well as a Happy New Year.

Please note that our offices will be closed between the 23rd of December and the 1st of January.

Thank you for your support and trust throughout the year, and we look forward to seeing you again in 2025.

Combining the magic of Christmas with the magic of

Combining the magic of Christmas with the magic of horses, makes kids’ eyes sparkle extra bright🌟

A huge THANK YOU to our friends at the @ate_lux for hosting an amazing show and to Kartesia Philanthropy for sponsoring and supporting the Winter Festival

Special thanks also go to our photographer Henri Goergen who captured these special moments

You can view the rest of the photos on our website : https://alan.lu/gallery/winter-festival-2024/

You don’t know how strong you truly are until yo

You don’t know how strong you truly are until you’re put to the test. Through her journey with her chronic and rare disease, Stephanie has learned to be even more open and direct, to push her limits and to be 100% herself.
Life with a rare disease is often marked by many ups and downs. It is a complicated journey that highlights all the more how resilient, strong, courageous and full of joy of life the affected boys, girls, women and men are.
For the Rare Rewind campaign, we asked people affected by a rare disease what they would say to themselves if they could travel back in time to the moment when it all started.
For more details about the campaign visit our website: www.alan.lu/rare-rewind
——————————————
Music by Coma-Media (Pixabay)

#Luxembourg
#Letzebuerg
#Luxemburg
#raredisease
#raresdiseases
#maladierare
#seltenekrankheit
#lebenmitbehinderung
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#specialneeds
#chronicillness
#chronicillnesswarrior
#disabilityadvocate
#disabilityawareness
#invisibledisability
#handicapinvisible
#maladiechronique
#chronischkrank
#inclusion #addisondisease

At 19 years old, no one thinks about being confron

At 19 years old, no one thinks about being confronted with a chronic, incurable disease… Cassandra’s life was turned upside down by her rare disease when she had just started university.
Over the years Cassandra has had to pivot many times. Today, she is graphic designer @lecachougraphic and the proud owner of a jewellery business @absynthiacreations
Life with a rare disease is often marked by many ups and downs. It is a complicated journey that highlights all the more how resilient, strong, courageous and full of joy of life the affected boys, girls, women and men are.
For the Rare Rewind campaign, we asked people affected by a rare disease what they would say to themselves if they could travel back in time to the moment when it all started.
For more details about the campaign visit our website: www.alan.lu/rare-rewind
——————————————
Music by RomanSenykMusic (Pixabay)
#Luxembourg
#Letzebuerg
#Luxemburg
#raredisease
#raresdiseases
#maladierare
#seltenekrankheit
#lebenmitbehinderung
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#specialneeds
#chronicillness
#chronicillnesswarrior
#disabilityadvocate
#disabilityawareness
#invisibledisability
#handicapinvisible
#maladiechronique
#chronischkrank
#inclusion
#eds
#edsawareness

Most people know what a stroke is. But few people

Most people know what a stroke is. But few people know that children can have strokes too. It is indeed rare, but not impossible. As illustrated by Leo. However, because it is so rare, there are unfortunately many hurdles associated with it, as Leo’s parents, Manon and Natascha know all too well.
Life with a rare disease is often marked by many ups and downs. It is a complicated journey that highlights all the more how resilient, strong, courageous and full of joy of life the affected boys, girls, women and men are.
For the Rare Rewind campaign, we asked people affected by a rare disease what they would say to themselves if they could travel back in time to the moment when it all started.
For more details about the campaign visit our website: www.alan.lu/rare-rewind
——————————————
Music by prazkhanal (Pixabay)
#Luxembourg
#Letzebuerg
#Luxemburg
#raredisease
#raresdiseases
#maladierare
#seltenekrankheit
#lebenmitbehinderung
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#specialneeds
#chronicillness
#chronicillnesswarrior
#disabilityadvocate
#disabilityawareness
#invisibledisability
#handicapinvisible
#maladiechronique
#chronischkrank
#inclusion
#stroke
#strokeawareness

In her teenage years, Lara noticed that something

In her teenage years, Lara noticed that something was not quite right with her body. But it was a very long way until she was finally diagnosed with a rare disease.
Life with a rare disease is often marked by many ups and downs. It is a complicated journey that highlights all the more how resilient, strong, courageous and full of joy of life the affected boys, girls, women and men are.
For the Rare Rewind campaign, we asked people affected by a rare disease what they would say to themselves if they could travel back in time to the moment when it all started.
For more details about the campaign visit our website: www.alan.lu/rare-rewind
——————————————
Music by Olexy (Pixabay)

#Luxembourg
#Letzebuerg
#Luxemburg
#raredisease
#raresdiseases
#maladierare
#seltenekrankheit
#lebenmitbehinderung
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#specialneeds
#chronicillness
#chronicillnesswarrior
#disabilityadvocate
#disabilityawareness
#invisibledisability
#handicapinvisible
#maladiechronique
#chronischkrank
#inclusion

Jean-Francis’s daughter was born with Rett syndr

Jean-Francis’s daughter was born with Rett syndrome, a rare genetic disease that mainly affects girls and leads to intellectual disability and severe motor impairments.
Jean-Francis is also president of the Association luxembourgeoise du Syndrome de Rett (@alsr.lu ) which advocates for the affected girls and their families here in Luxembourg.
Life with a rare disease is often marked by many ups and downs. It is a complicated journey that highlights all the more how resilient, strong, courageous and full of joy of life the affected boys, girls, women and men are.
For the Rare Rewind campaign, we asked people affected by a rare disease what they would say to themselves if they could travel back in time to the moment when it all started.
For more details about the campaign visit our website: www.alan.lu/rare-rewind
——————————————
Music by Coma-Media (Pixabay)

#Luxembourg
#Letzebuerg
#Luxemburg
#raredisease
#raresdiseases
#maladierare
#seltenekrankheit
#lebenmitbehinderung
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#specialneeds
#chronicillness
#chronicillnesswarrior
#disabilityadvocate
#disabilityawareness
#invisibledisability
#handicapinvisible
#maladiechronique
#chronischkrank
#inclusion
#rettsydrome
#sydromederett

Abby lives with a disease so rare that no other pe

Abby lives with a disease so rare that no other person in the world is known to have the same genetic change.
Life with a rare disease is often marked by many ups and downs. It is a complicated journey that highlights all the more how resilient, strong, courageous and full of joy of life the affected boys, girls, women and men are.
For the Rare Rewind campaign, we asked people affected by a rare disease what they would say to themselves if they could travel back in time to the moment when it all started.
For more details about the campaign visit our website: www.alan.lu/rare-rewind
——————————————
Music by SoulProdMusic (Pixabay)

#Luxembourg
#Letzebuerg
#Luxemburg
#raredisease
#raresdiseases
#maladierare
#seltenekrankheit
#lebenmitbehinderung
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#specialneeds
#chronicillness
#chronicillnesswarrior
#disabilityadvocate
#disabilityawareness
#invisibledisability
#handicapinvisible
#maladiechronique
#chronischkrank
#inclusion

Vicky’s son, Matteo, lives with Pitt-Hopkins syn

Vicky’s son, Matteo, lives with Pitt-Hopkins syndrome, a rare neurological disease.
Life with a rare disease is often marked by many ups and downs. It is a complicated journey that highlights all the more how resilient, strong, courageous and full of joy of life the affected boys, girls, women and men are.
For the Rare Rewind campaign, we asked people affected by a rare disease what they would say to themselves if they could travel back in time to the moment when it all started.
For more details about the campaign visit our website: www.alan.lu/rare-rewind
——————————————
Music by Gentle (Pixabay)

#Luxembourg
#Letzebuerg
#Luxemburg
#raredisease
#raresdiseases
#maladierare
#seltenekrankheit
#lebenmitbehinderung
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#specialneeds
#chronicillness
#chronicillnesswarrior
#disabilityadvocate
#disabilityawareness
#invisibledisability
#handicapinvisible
#maladiechronique
#chronischkrank
#inclusion
#pitthopkins

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