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Survey results : COVID-19 vaccination of people with rare diseases

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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


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L-1896 Kockelscheuer

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alanmaladiesraresluxembourg

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Sep 17

Open
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 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 ...

alanmaladiesraresluxembourg

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Sep 15

Open
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

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 ...

alanmaladiesraresluxembourg

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Sep 13

Open
Today’s invisible hero is Ben alias Super Bo 🦸‍♂️ Age: 8 Disease: Ehlers-Danlos Syndrome Symptoms: tummy pain, hypermobility, clumsiness, Superpower: annoying people Philosophy: Being strong means getting up every time you get knocked down Greatest wish: to feel and be better Thank you, Ben, for being part of our “Invisible Heroes” campaign with @edsletzebuerg and sharing your story and your enthusiasm 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 Ben alias Super Bo 🦸‍♂️

Age: 8
Disease: Ehlers-Danlos Syndrome
Symptoms: tummy pain, hypermobility, clumsiness,
Superpower: annoying people
Philosophy: Being strong means getting up every time you get knocked down
Greatest wish: to feel and be better

Thank you, Ben, for being part of our “Invisible Heroes” campaign with @edsletzebuerg
and sharing your story and your enthusiasm 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 ...

alanmaladiesraresluxembourg

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Sep 10

Open
Today’s invisible hero is Stephanie alias Roude Today’s invisible hero is Stephanie alias Roude Blëtz (Red Lightning) ⚡️ Age: 38 Disease: Addison Disease Symptoms: fatigue, fainting, nausea, loss of appetite, joint pain Superpower: Always getting back up Philosophy: Take it as it comes, you can’t change it anyway Greatest wish: to not be pigeonholed Thank you, Stephanie, for opening up and sharing your resilience and your story as part of our “Invisible Heroes” campaign with @edsletzebuerg Photo (C) ALAN / Henri Goergen #invisibleheroes #onsiichtbarhelden #everydayheroes #morbusaddison #addisondisease #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 Stephanie alias Roude Blëtz (Red Lightning) ⚡️

Age: 38
Disease: Addison Disease
Symptoms: fatigue, fainting, nausea, loss of appetite, joint pain
Superpower: Always getting back up
Philosophy: Take it as it comes, you can’t change it anyway
Greatest wish: to not be pigeonholed

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

Photo (C) ALAN / Henri Goergen

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

alanmaladiesraresluxembourg

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Sep 8

Open
Today’s invisible hero is Jessica alias Babbelkëscht (Chatterbox) 🦓 Age: 38 Disease: Ehlers-Danlos Syndrome Symptoms: hypermobility, dislocation, joint pain, migraines, distension, arthrosis, asthma, allergies, light- and odour-sensitivities, digestive issues… Superpower: annoying laugh Philosophy: Live and let live Greatest wish: more understanding from doctors and Society in general Jessica is also the president of our cherished partner @edsletzebuerg so, go check them out ! Thank you Jessica, for coming up with the idea for this campaign and for being such an inspiration and joy to work with! 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 Jessica alias Babbelkëscht (Chatterbox) 🦓

Age: 38
Disease: Ehlers-Danlos Syndrome
Symptoms: hypermobility, dislocation, joint pain, migraines, distension, arthrosis, asthma, allergies, light- and odour-sensitivities, digestive issues…
Superpower: annoying laugh
Philosophy: Live and let live
Greatest wish: more understanding from doctors and Society in general

Jessica is also the president of our cherished partner @edsletzebuerg so, go check them out !

Thank you Jessica, for coming up with the idea for this campaign and for being such an inspiration and joy to work with!

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 ...

alanmaladiesraresluxembourg

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Sep 6

Open
Today’s invisible hero is Lynn alias SuperMOM 🦸‍♀️ Age: 33 Disease: Behçet disease Symptoms: oral aphthae, inflammation of the gastrointestinal tract, joint inflammation, thrombophlebitis Superpower: Power of Endurance Philosophy: He/she who fights can lose, but he/she who does not fight has already lost! Greatest wish: good health for my family Thank you, Lynn, for being part of our “Invisible Heroes” campaign with @edsletzebuerg and for sharing your story and your strength with the world. Photo (C) ALAN / Henri Goergen #invisibleheroes #onsiichtbarhelden #everydayheroes #behcets #behcetsdisease #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 Lynn alias SuperMOM 🦸‍♀️

Age: 33
Disease: Behçet disease
Symptoms: oral aphthae, inflammation of the gastrointestinal tract, joint inflammation, thrombophlebitis
Superpower: Power of Endurance
Philosophy: He/she who fights can lose, but he/she who does not fight has already lost!
Greatest wish: good health for my family

Thank you, Lynn, for being part of our “Invisible Heroes” campaign with @edsletzebuerg and for sharing your story and your strength with the world.

Photo (C) ALAN / Henri Goergen

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

alanmaladiesraresluxembourg

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Sep 3

Open
Today’s invisible hero is Abby alias Sunshine Gi Today’s invisible hero is Abby alias Sunshine Girl 🌞 Age: 11 Disease: Rare genetic defect TPI1 Symptoms: dystonia, fatigue, pain Superpower: constantly beaming and happy Philosophy: Always smile no matter what Greatest wish: To be able to go where I want to, when I want to, without any help Thank you, Abby, for being part of our “Invisible Heroes” campaign with @edsletzebuerg and sharing your story and your smile with the world. Photo (C) ALAN / Henri Goergen #invisibleheroes #onsiichtbarhelden #everydayheroes #geneticdisease #geneticdisorder #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 Abby alias Sunshine Girl 🌞

Age: 11
Disease: Rare genetic defect TPI1
Symptoms: dystonia, fatigue, pain
Superpower: constantly beaming and happy
Philosophy: Always smile no matter what
Greatest wish: To be able to go where I want to, when I want to, without any help

Thank you, Abby, for being part of our “Invisible Heroes” campaign with @edsletzebuerg
and sharing your story and your smile with the world.

Photo (C) ALAN / Henri Goergen

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

alanmaladiesraresluxembourg

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Sep 1

Open
"You don't look sick." “You’re always tired." "You don't look sick." “You’re always tired." "Don’t exaggerate. I also get pain, but I don’t make such a fuss." “How dare you park in a parking space for people with disabilities?" Unfortunately, people with a rare and invisible disease hear sentences like these far too often, because you can’t see their disease and symptoms from the outside. To help fight these misconceptions and prejudices, we are launching a campaign with our partner @edsletzebuerg to raise awareness for rare and invisible diseases. Throughout the month of September, we will introduce you to 10 adults and children who are “invisible heroes” in their daily lives, because they fight against a rare, invisible disease and against prejudices. To support our heroes and others living with invisible illnesses, you can: ➡️ Share this post!!! ➡️ Follow us and @edsletzebuerg so you don’t miss the rest of the campaign ➡️ Approach others openly and without judgment, listen to them and believe them ➡️ Share your superpower and greatest wish in the comments if you live with an invisible disease yourself To see the whole campaign, visit the link in our bio A big THANK YOU to the heroes of our campaign, for opening up and showing us that despite living with a rare disease, you can enjoy life to the fullest and have fun. And finally, THANK YOU @henrigoergen for taking these fabulous photos for the campaign. #invisbleheroes #onsiichtbarhelden #everydayheroes #Luxembourg #raredisease #raresdiseases #maladiesrares #selteneerkrankungen #invisibledisability #invisibileillness #unsichtbarekrankheit #maladieinvisible #invisiblieillnessawareness #notalldisabilitiesarevisible #spoonie #spooniewarrior #spooniecommunity #nonprofit #raiseawareness #disabilityawareness #chronicdisease #chronicillnesswarrior #chronicillnessawareness #chronicillness #chronicallyill #chronischkrank #maladiechronique

"You don't look sick."
“You’re always tired."
"Don’t exaggerate. I also get pain, but I don’t make such a fuss."
“How dare you park in a parking space for people with disabilities?"

Unfortunately, people with a rare and invisible disease hear sentences like these far too often, because you can’t see their disease and symptoms from the outside.

To help fight these misconceptions and prejudices, we are launching a campaign with our partner @edsletzebuerg to raise awareness for rare and invisible diseases.

Throughout the month of September, we will introduce you to 10 adults and children who are “invisible heroes” in their daily lives, because they fight against a rare, invisible disease and against prejudices.

To support our heroes and others living with invisible illnesses, you can:

➡️ Share this post!!!
➡️ Follow us and @edsletzebuerg so you don’t miss the rest of the campaign
➡️ Approach others openly and without judgment, listen to them and believe them
➡️ Share your superpower and greatest wish in the comments if you live with an invisible disease yourself

To see the whole campaign, visit the link in our bio

A big THANK YOU to the heroes of our campaign, for opening up and showing us that despite living with a rare disease, you can enjoy life to the fullest and have fun.

And finally, THANK YOU @henrigoergen for taking these fabulous photos for the campaign.

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

alanmaladiesraresluxembourg

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Jul 7

Open
“For some people with a rare disease, the isolat “For some people with a rare disease, the isolation caused by the pandemic, in combination with factors such as difficulties accessing health care, have been a catalyst for the development or exacerbation of psychopathologies such as anxiety disorders, depression and obsessive-compulsive disorders.” For our Annual Report, we interviewed ALAN’s psychologists / psychotherapists, Corinne Thill and Hugo Leite. They discuss: • How they were able to adapt their way of working to the COVID-19 restrictions, • What the impact of the pandemic on the mental health of their patients was, • What we can do to minimise this impact on our mental health. You can read the full interview (in French) in our Annual Report : link in bio #Luxembourg #raredisease #raresdiseases #maladiesrares #selteneerkrankungen #mentalhealth #covid #covidmentalhealth #santementale #santémentale #psychischegesundheit #counseling #counselling #psychotherapy #spoonielife #chronicillnesssupport #chronicillnesslife #disabilityadvocate #careaboutrare #maladieinvisible #lebenmitbehinderung #luxemburg #luxemburgo #benevolat #specialneedschildren #specialneeds #tousensemble #inclusion

“For some people with a rare disease, the isolation caused by the pandemic, in combination with factors such as difficulties accessing health care, have been a catalyst for the development or exacerbation of psychopathologies such as anxiety disorders, depression and obsessive-compulsive disorders.”

For our Annual Report, we interviewed ALAN’s psychologists / psychotherapists, Corinne Thill and Hugo Leite.

They discuss:
• How they were able to adapt their way of working to the COVID-19 restrictions,
• What the impact of the pandemic on the mental health of their patients was,
• What we can do to minimise this impact on our mental health.

You can read the full interview (in French) in our Annual Report : link in bio

#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#mentalhealth
#covid
#covidmentalhealth
#santementale
#santémentale
#psychischegesundheit
#counseling
#counselling
#psychotherapy
#spoonielife
#chronicillnesssupport
#chronicillnesslife
#disabilityadvocate
#careaboutrare
#maladieinvisible
#lebenmitbehinderung
#luxemburg
#luxemburgo
#benevolat
#specialneedschildren
#specialneeds
#tousensemble
#inclusion ...

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