Français
Deutsch

Home
Rare diseases
Our services
News & events
About us
Contact us

Support us Login

Home
Rare diseases
Our services
News & events
About us
Contact us

Support us Login

Home
Rare diseases
Our services
News & events
About us
Contact us
Support us
Login
Français
Deutsch

Newsletter Archives

2021

July

Discover

June

Discover

March

Discover

2020

November

Discover

June

Discover

April - Special Edition: COVID-19

Discover

March

Discover

2019

November

Discover

September

Discover

May

Discover

Get in touch to tell us your story

About Us

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, 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

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

EN FR DE

Menu

Home
Rare diseases
Our services
News & Events
About us
Contact us
Support us
Sitemap

Newsletter

First name *

Last name *

Email *

Newsletter Archives

Checkboxes *

I have read and agree with the terms of ALAN’s data protection policy.

Name

Follow us

We have been enjoying our gorgeous new offices at

We have been enjoying our gorgeous new offices at Kockelscheuer for a few months. Now, we finally got the chance to properly inaugurate them and celebrate with our partners, volunteers and active members 🎉🍾🎻🍢

A huge THANK YOU to @schroeder.associes , the council of Roeser, @cactus.lu , @marsdibarto , Bob Lessel, Noémie Desquiotz-Sunnen, Magali Weber, Giulia Helminger, Sandra Leidner, @myriam.schmit_msdesign & @henrigoergen , who helped make this night unforgettable.✨

Swipe left ⬅️ to see more photos and head over to our website to see the complete photo gallery for the event.

(c) Henri Goergen / ALAN

#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#volunteering
#stongertogether
#inauguration
#housewarmingparty
#chronicillness
#disabilityawareness
#chronicdisease
#nonprofitorganizations
#geneticdisorder
#maladiechronique
#volunteering
#stongertogether
#patientadvocate
#disabilityadvocate
#counselling
#psychotherapy
#socialworker
#socialsupport

“My name is Elisabeth, and I am a mom of 6 child

“My name is Elisabeth, and I am a mom of 6 children. My youngest, Amy, is 6 and has a rare genetic disease related to a gene called SCN2A.

Amy’s birth was normal - everything went well. But what started afterwards was completely unexpected and very hard. Amy was unable to drink. I immediately felt that something was wrong. It was a difficult time for us because we didn't know what was going on with her at that point.

Amy developed very slowly in the first few months. At 8 months old, she couldn't sit, nor crawl. She was just stiff. The paediatrician noticed that Amy needed support from the Service de Rééducation précoce. Amy started receiving kinesiotherapy and ergotherapy, which brought some improvements. At 14 months old, Amy was able to keep her balance and at 17 months she was able to sit. Then, she learned to crawl at the age of 20 months. We thought we made it. But, no, things got worse from there.

Amy started to have seizures when she was 20 months old and had to go to the hospital. The treating paediatric neurologist had a suspicion what caused Amy's delay and we decide to do a genetic test. The diagnosis: a rare genetic mutation. Part of the chromosome is missing. It is accompanied by developmental & speech delays, symptoms of autism and epilepsy. At that moment our world collapsed. Thousands of questions went through my mind, and I felt profound sadness.

But, from then on, we knew how to deal with the situation. Our everyday life changed overnight. We had to do a lot of therapies with Amy. At 28 months, Amy was able to walk on her own. Every little improvement was a gift to us. Amy's development is very slow in many areas. Amy can't speak. But she communicates through sounds and gestures. Everyday life with Amy is difficult, but every moment with her is just beautiful.

We have been through a lot, and we still have a long way to go. But we have hope and will not give up. We learned to accept the situation. Amy has been going to school for 3 years and it’s wonderful to see how she blossoms and is accepted by the other children. We are grateful for every bit of progress, and, with a lot of strength and love, we stick together as a family.”

Smiles all round at the ALAN Family Day 😊 This

Smiles all round at the ALAN Family Day 😊

This year our Family Day took us up north to the @robbesscheier where we fed the farm animals, enjoyed a horse carriage ride, baked delicious pastries and shared a wonderful meal and memories.

Photos © Henri Goergen / ALAN

#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#robbesscheier
#family
#familytime
#familyday
#bonding
#chronicillness
#chronicallyill
#disabilityawareness
#chronicdisease
#spooniesupport
#invisibledisability
#notalldisabilitiesarevisible
#chronischkrank
#nonprofitorganizations
#geneticdisorder
#maladiechronique
#raresyndrome
#volunteering
#stongertogether

Today’s invisible hero is Jean-Paul alias Chiari

Today’s invisible hero is Jean-Paul alias Chiari Warrior 🥊

Age: 56
Disease: Arnold-Chiari malformation type I
Symptoms: pain, dizziness, fatigue, swallowing problems, scoliosis, compression of the nerves and spinal cord, herniated discs
Superpower: family & nature
Philosophy: A day without laughter is a day wasted!
Greatest wish: For doctors and other people to be more understanding

Thank you, Jean-Paul, for your openness and passion. You are a true advocate and we are so glad you are part of our “Invisible Heroes” campaign with @edsletzebuerg

Photo (C) ALAN / Henri Goergen

#invisibleheroes
#onsiichtbarhelden
#everydayheroes
#arnoldchiari
#arnoldchiarimalformation
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#invisibledisability
#invisibileillness
#unsichtbarekrankheit
#maladieinvisible
#invisiblieillnessawareness
#notalldisabilitiesarevisible
#spoonie
#spooniewarrior
#nonprofit
#raiseawareness
#disabilityawareness
#chronicdisease
#chronicillnesswarrior
#chronicillnessawareness
#chronicillness
#chronicallyill
#chronischkrank
#maladiechronique

Today’s invisible hero is Samantha alias Phoeniz

Today’s invisible hero is Samantha alias Phoenizia 🦅

Age: 34
Disease: Myasthenia Gravis
Symptoms: muscle weakness, vision problems, trouble swallowing, breathing problems, impaired mobility
Superpower: « Le pouvoir de renaître de ses cendres après s’être consumé. » (the power of being reborn from one’s own ashes)
Philosophy: He/she who fights can lose, but he/she who does not fight has already lost!
Greatest wish: to be there for my kids for as long as possible

Thank you, Samantha, for opening up and sharing your tenacity and your story as part of our “Invisible Heroes” campaign with @edsletzebuerg

Photo (C) ALAN / Henri Goergen

#invisibleheroes
#onsiichtbarhelden
#everydayheroes
#myastheniagravis
#myastheniagravisawareness
#myastheniagraviswarrior
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#invisibledisability
#invisibileillness
#unsichtbarekrankheit
#maladieinvisible
#invisiblieillnessawareness
#notalldisabilitiesarevisible
#spoonie
#spooniewarrior
#nonprofit
#raiseawareness
#disabilityawareness
#chronicdisease
#chronicillnesswarrior
#chronicillnessawareness
#chronicillness
#chronicallyill
#chronischkrank
#maladiechronique

Today’s invisible hero is Marielle alias Beiekin

Today’s invisible hero is Marielle alias Beiekinnigin (Queen Bee) 🐝

Age: 31
Disease: Charcot-Marie-Tooth
Symptoms: weak muscle strength (progressive atrophy), pain, loss of touch sensation in the legs, feet, toes, and fingers, balance problems, quick exhaustion from daily activities, regular falls
Superpower: my smile, my empathy, my singing voice
Philosophy: Throw kindness around like confetti!
Greatest wish: to be physically stronger in the future so life can be a bit easier

Thank you, Marielle, for being part of our “Invisible Heroes” campaign with @edsletzebuerg and sharing your wonderful humour and kindheartedness with the world.

Photo (C) ALAN / Henri Goergen

#invisibleheroes
#onsiichtbarhelden
#everydayheroes
#charcotmarietooth
#cmtawareness
#cmtstrong
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#invisibledisability
#invisibileillness
#unsichtbarekrankheit
#maladieinvisible
#invisiblieillnessawareness
#notalldisabilitiesarevisible
#spoonie
#spooniewarrior
#nonprofit
#raiseawareness
#disabilityawareness
#chronicdisease
#chronicillnesswarrior
#chronicillnessawareness
#chronicillness
#chronicallyill
#chronischkrank
#maladiechronique

Today’s invisible hero is Samantha alias Wonderg

Today’s invisible hero is Samantha alias Wondergirl 🦸‍♀️

Age: 10
Disease: Ehlers-Danlos Syndrome
Symptoms: hypermobility, dislocations, bruises, scoliosis, asthma…
Superpower: asking silly questions
Philosophy: Don’t rack your brain about things, you’ve only got one
Greatest wish: a cure

Thank you, Samantha, for being part of our “Invisible Heroes” campaign with @edsletzebuerg and sharing your wonderful humour and kindheartedness with the world.

Photo (C) ALAN / Henri Goergen

#invisibleheroes
#onsiichtbarhelden
#everydayheroes
#edswarrior
#ehlersdanlossyndrome
#ehlersdanlosawareness
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#invisibledisability
#invisibileillness
#unsichtbarekrankheit
#maladieinvisible
#invisiblieillnessawareness
#notalldisabilitiesarevisible
#spoonie
#spooniewarrior
#zebrastrong
#raiseawareness
#disabilityawareness
#chronicdisease
#chronicillnesswarrior
#chronicillnessawareness
#chronicillness
#chronicallyill
#chronischkrank
#maladiechronique

Today’s invisible hero is Sylvie alias Super Mom

Today’s invisible hero is Sylvie alias Super Moma 💪

Age: 57
Disease: EPP (Erythropoietic Protoporphyria)
Symptoms: extreme pain when I go into sunlight, all year round
Superpower: being human
Philosophy: Never give up
Greatest wish: more financial means for rare disease research

Thank you, Sylvie, for opening up and sharing your kindness and your story with the world, as part of our “Invisible Heroes” campaign with @edsletzebuerg

Photo (C) ALAN / Henri Goergen

#invisibleheroes
#onsiichtbarhelden
#everydayheroes
#erythropoieticprotoporphyria
#porphyria
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#invisibledisability
#invisibileillness
#unsichtbarekrankheit
#maladieinvisible
#invisiblieillnessawareness
#notalldisabilitiesarevisible
#spoonie
#spooniewarrior
#spooniecommunity
#nonprofit
#raiseawareness
#disabilityawareness
#chronicdisease
#chronicillnesswarrior
#chronicillnessawareness
#chronicillness
#chronicallyill
#chronischkrank
#maladiechronique

Today’s invisible hero is Alexandra alias Ninja

Today’s invisible hero is Alexandra alias Ninja 🤸‍♀️

Age: 33
Disease: narcolepsy with cataplexy and restless legs syndrome
Symptoms: excessive, brutal and sudden fatigue, sudden loss of muscle tone, sleep paralysis with hallucinations, poor sleep quality with severe astral nightmares …
Superpower: overcoming all sorts of obstacles through running, climbing, swinging, acrobatics and precision (adrenaline)
Philosophy: “Only the sky is my limit”, “Be strong, Take care”, “Challenge yourself everyday”
Greatest wish: a cure, more awareness, simplified bureaucracy, more understanding, for the government to not lump everyone together

Thank you, Alexandra, for being part of our “Invisible Heroes” campaign with @edsletzebuerg and sharing your experiences and your spark with the world.

Photo (C) ALAN / Ali Sahib

#invisibleheroes
#onsiichtbarhelden
#everydayheroes
#narcolepsyawareness
#narcolepsienotalone
#narkolepsywithcataplexy
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#invisibledisability
#invisibileillness
#unsichtbarekrankheit
#maladieinvisible
#invisiblieillnessawareness
#notalldisabilitiesarevisible
#spoonie
#spooniewarrior
#nonprofit
#raiseawareness
#disabilityawareness
#chronicdisease
#chronicillnesswarrior
#chronicillnessawareness
#chronicillness
#chronicallyill
#chronischkrank
#maladiechronique

© 2021 ALAN. Legal notices

Made with ❤ by Quattro Creative.

Font Resize

Contrast

Accessibility by WAH

Skip to content
Sitemap

X