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Accueil
Maladies rares
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À propos d’ALAN
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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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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

When you live with a rare disease, you are unfortu

When you live with a rare disease, you are unfortunately often confronted with a lack of understanding or misunderstandings, be that from family and friends, from medical staff, or in the workplace

This is why we are organizing a training day in September where you can learn concrete techniques to build a more constructive and effective dialogue with the people around you.

You can find all the details through the link in our bio

#raredisease #patientempowerment #training #maladierare #communication

May is Neurofibromatosis Awareness Month, which is

May is Neurofibromatosis Awareness Month, which is why today we want to share Samia & Mehdi's story with you:
“As a child, Mehdi was always a creative and imaginative soul. He enjoyed dressing up and disguising himself to scare me. His favorite time of the year was Halloween. His favorite artist was Michael Jackson. At 3 years old, he could do the moonwalk.

Mehdi was diagnosed with neurofibromatosis (NF) when he was a baby. NF is a genetic disorder that refers to three different conditions involving the development of tumors that may affect the brain, spinal cord, and the nerves that send signals between the brain and spinal cord, and all other parts of the body.

When he was 12, he had a brain tumor that turned out to be benign. The doctor was able to remove it. He never complained once. He had another in his torso that was taken out too. Later on, a sarcoma grew inside of his left thigh, this time, he didn’t take care of it right away. His leg had swollen. By the time my parents learned about it, it was too late. The tumor had grown too big, and it was no longer operable. We were devastated. We had no idea he would not survive. I miss him so much.

In 2007, Mehdi moved to LA to live with me, where he attended the NY Film Academy School. Initially, he wanted to be an actor, then switched to directing. He received his Bachelor of Fine Arts in Acting for Film in September 2015. Before graduation, he made a short video about living with NF. I watched it with tears in my eyes, filled with pride for everything my brother had accomplished in such a short amount of time. I knew he was destined for greatness. Sadly, Mehdi's life was cut tragically short, and he passed away on January 18th, 2018, at the age of 28.

In memory of my angel brother, I want to help others realize how lethal NF can be. I am on the European board of directors for the Children’s Tumor Foundation. Our goal is to spread awareness and raise funds to find a cure.

Mehdi was a hero, NF Avenger, a handsome young man adored by so many. Gone way too soon."

Samia, Mehdi’s sister

For more information about NF, please visit www.ctf.org

#neurofibromatosis #nfawarness #raredisease

We are very happy and proud to announce that our c

We are very happy and proud to announce that our consultation service has received the “EU-Promising Practice in the field of Mental Health” label from the European Commission in recognition of its holistic approach to psycho-social support of people affected by a rare diseases.

More information on the news section of our website www.alan.lu

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