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Journée des Maladies Rares

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.

(+352) 266 112 - 1
info@alan.lu
Parc Luxite
13, rue de l'Innovation
L-1896 Kockelscheuer

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alanmaladiesraresluxembourg

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Fév 22

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My life with MoyaMoya disease: “My name is Jean- My life with MoyaMoya disease: “My name is Jean-Claude, I am 53 years old, married. And I have 2 daughters with my spouse Fiona. 10 years ago, one morning in March my wife insisted that I had a stroke during the night. She thought the two halves of my face were desynchronised. I had felt a little dizzy when getting up but being Diabetic since adolescence I thought I had an undetected low sugar episode. However, at the hospital we got confirmation that I had indeed had a small stroke. It was mentioned to my wife that I might have MoyaMoya. 2 days after returning home, I had my second stroke. This time I felt the pain on the left side of the brain. Afterwards I was paralysed on my right side and had difficulties speaking. I spent 5 weeks in the hospital, followed by a few months of re-education. My prolonged stay allowed the neurologists to confirm the MoyaMoya hypothesis. MoyaMoya is a rare neurological disease, where the blood vessels in the brain close. The brain compensates that by developing a multitude of microscopic blood vessels, invisible on a normal scan. These vessels are however prone to cerebral hemorrhages and thus to strokes. Last week of June I had my first operation. Called “Burr holes”, it consisted of drilling small holes in my skull, so that the blood vessels under the hair can slowly penetrate inside my brain and compensate for the reduced blood circulation. 2 weeks later I had my second mini stroke, this time on the right side of the brain. Like back in March, three days in the hospital for observation. “My” MoyaMoya was not one-sided, as originally thought. So, in September the same year, I had my second Burr holes operation, but this time on the right side of the skull. Since then, I no longer have the same «brain usage endurance», I am feeling a mild to strong tiredness constantly and I have difficulties writing. But I was able to move on professionally, with adaptations. I joined ALAN because I think it is necessary to show that rare illnesses can be “discovered” at any age, in any shape or forms, visible to the outside or not. And one should be able to speak openly about them, without fear of rejection or discrimination."

My life with MoyaMoya disease:
“My name is Jean-Claude, I am 53 years old, married. And I have 2 daughters with my spouse Fiona.
10 years ago, one morning in March my wife insisted that I had a stroke during the night. She thought the two halves of my face were desynchronised. I had felt a little dizzy when getting up but being Diabetic since adolescence I thought I had an undetected low sugar episode.

However, at the hospital we got confirmation that I had indeed had a small stroke. It was mentioned to my wife that I might have MoyaMoya. 2 days after returning home, I had my second stroke. This time I felt the pain on the left side of the brain. Afterwards I was paralysed on my right side and had difficulties speaking. I spent 5 weeks in the hospital, followed by a few months of re-education. My prolonged stay allowed the neurologists to confirm the MoyaMoya hypothesis.

MoyaMoya is a rare neurological disease, where the blood vessels in the brain close. The brain compensates that by developing a multitude of microscopic blood vessels, invisible on a normal scan. These vessels are however prone to cerebral hemorrhages and thus to strokes.

Last week of June I had my first operation. Called “Burr holes”, it consisted of drilling small holes in my skull, so that the blood vessels under the hair can slowly penetrate inside my brain and compensate for the reduced blood circulation.
2 weeks later I had my second mini stroke, this time on the right side of the brain. Like back in March, three days in the hospital for observation. “My” MoyaMoya was not one-sided, as originally thought. So, in September the same year, I had my second Burr holes operation, but this time on the right side of the skull.

Since then, I no longer have the same «brain usage endurance», I am feeling a mild to strong tiredness constantly and I have difficulties writing. But I was able to move on professionally, with adaptations.

I joined ALAN because I think it is necessary to show that rare illnesses can be “discovered” at any age, in any shape or forms, visible to the outside or not. And one should be able to speak openly about them, without fear of rejection or discrimination." ...

alanmaladiesraresluxembourg

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Fév 2

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We are moving!!! 📦🚛 As of the 1st of Februa We are moving!!! 📦🚛 As of the 1st of February 2021, our main offices will no longer be located in Bascharage, but at the following address: ALAN – Maladies Rares Luxembourg Parc Luxite 13, rue de l’Innovation L-1896 Kockelscheuer Luxembourg Our offices are now located in the new, innovative, bright and friendly building of our valued partner, the engineering firm @schroeder.associes. The modern, easily accessible, and spacious premises perfectly suit our needs, allowing us to fulfil our missions in the coming years. We look forward to welcoming our first visitors and patients in this magnificent building located in an exceptional environmental setting 🌳. Image © Schroeder & Associés SA #Luxembourg #moving #newbeginning #raredisease #raresdiseases #maladiesrares #selteneerkrankungen #chronicillness #disabilityawareness #chronicdisease #chronischkrank #nonprofitorganizations #geneticdisorder #raresyndrome #volunteering #stongertogether #tousensemble #inclusion

We are moving!!! 📦🚛

As of the 1st of February 2021, our main offices will no longer be located in Bascharage, but at the following address:

ALAN – Maladies Rares Luxembourg
Parc Luxite
13, rue de l’Innovation
L-1896 Kockelscheuer
Luxembourg

Our offices are now located in the new, innovative, bright and friendly building of our valued partner, the engineering firm @schroeder.associes. The modern, easily accessible, and spacious premises perfectly suit our needs, allowing us to fulfil our missions in the coming years. We look forward to welcoming our first visitors and patients in this magnificent building located in an exceptional environmental setting 🌳.

Image © Schroeder & Associés SA

#Luxembourg
#moving
#newbeginning
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#chronicillness
#disabilityawareness
#chronicdisease
#chronischkrank
#nonprofitorganizations
#geneticdisorder
#raresyndrome
#volunteering
#stongertogether
#tousensemble
#inclusion ...

alanmaladiesraresluxembourg

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Déc 12

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Today is Universal Health Coverage Day! Universal Today is Universal Health Coverage Day! Universal Health Coverage ensures all people can access quality health services without financial hardship. People living with a #RareDisease have specific medical & social needs. They must be fully included in #UHC programmes. Leave no one behind. Demand #UHC4RareDiseases !

Today is Universal Health Coverage Day!

Universal Health Coverage ensures all people can access quality health services without financial hardship.

People living with a #RareDisease have specific medical & social needs. They must be fully included in #UHC programmes.

Leave no one behind.
Demand #UHC4RareDiseases ! ...

alanmaladiesraresluxembourg

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Déc 2

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My life with Arnold-Chiari malformation type I, by My life with Arnold-Chiari malformation type I, by Jean-Paul: “My name is Jean-Paul. I am 55 years old, married and father to a wonderful daughter. I used to do a lot of sports. I played football and was even referee, and trainer for a few years. On top of that I used to run, cycle, swim and go to the gym. I also participated in 10K races, semi-marathons, duathlons, and triathlons. Then in 2003, following an accident, I started seeing different doctors, physio- and psychotherapist because I was experiencing frequent back and neck pain, as well as headaches. In 2005 I was finally diagnosed with Arnold-Chiari malformation type I. Chiari malformation is a structural defect in the cerebellum. It is characterised by headaches, swallowing difficulties, nausea, dizziness, neck pain, an unsteady gait, poor hand coordination, and tingling or numbness of the hand & feet. In addition, the following symptoms may appear; slow or fast heart rhythm, problems of the spine, abnormal breathing, such as central sleep apnoea, which is characterised by periods where you stop breathing in your sleep. In severe cases it can also cause paralysis. While I did between 12-20 hours of sports per week back until 2003, today I have difficulties doing any sports at all. I can only do physical activities (going for walks, cycling) when I am not in too much pain. Due to new health complications I decided to get in touch with ALAN – Maladies Rares Luxembourg earlier this year. I have received invaluable support and am learning to cope differently with my disease. For example, I started doing daily exercises like Yin Yoga or Progressive Relaxation. I am sharing my story to solicit everyone to not judge people who appear to have physical or mental difficulties, because these people might have a rare disease or other chronic health problems. Please be open and don’t judge others based on their looks or abilities, because you too may develop a disease at some point. I am hoping that in the future people with a rare or chronic disease will face less judgement and more understanding."

My life with Arnold-Chiari malformation type I, by Jean-Paul:

“My name is Jean-Paul. I am 55 years old, married and father to a wonderful daughter.

I used to do a lot of sports. I played football and was even referee, and trainer for a few years. On top of that I used to run, cycle, swim and go to the gym. I also participated in 10K races, semi-marathons, duathlons, and triathlons.

Then in 2003, following an accident, I started seeing different doctors, physio- and psychotherapist because I was experiencing frequent back and neck pain, as well as headaches. In 2005 I was finally diagnosed with Arnold-Chiari malformation type I.

Chiari malformation is a structural defect in the cerebellum. It is characterised by headaches, swallowing difficulties, nausea, dizziness, neck pain, an unsteady gait, poor hand coordination, and tingling or numbness of the hand & feet. In addition, the following symptoms may appear; slow or fast heart rhythm, problems of the spine, abnormal breathing, such as central sleep apnoea, which is characterised by periods where you stop breathing in your sleep. In severe cases it can also cause paralysis.

While I did between 12-20 hours of sports per week back until 2003, today I have difficulties doing any sports at all. I can only do physical activities (going for walks, cycling) when I am not in too much pain.

Due to new health complications I decided to get in touch with ALAN – Maladies Rares Luxembourg earlier this year. I have received invaluable support and am learning to cope differently with my disease. For example, I started doing daily exercises like Yin Yoga or Progressive Relaxation.

I am sharing my story to solicit everyone to not judge people who appear to have physical or mental difficulties, because these people might have a rare disease or other chronic health problems. Please be open and don’t judge others based on their looks or abilities, because you too may develop a disease at some point. I am hoping that in the future people with a rare or chronic disease will face less judgement and more understanding." ...

alanmaladiesraresluxembourg

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Nov 20

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For all the children with a rare disease. For all For all the children with a rare disease. For all the children with special needs. For all the children of the world. Let’s fight for them. Let’s fight for their rights. Let’s fight for a better future for them. Today is World Children’s Day. Today we raise awareness for their rights. Today we celebrate them, especially those young warriors that are fighting a rare, chronic or genetic disease and teach us to not take things for granted. To celebrate the child in your life, please share some things they have taught you below. #worldchildrensday #Weltkannerdag #weltkindertag #specialneedschildren #specialneeds #advocacy #Luxembourg #raredisease #raresdiseases #maladiesrares #selteneerkrankungen #chronicillness #chronicallyill #chronicillnesswarrior #disabilityawareness #chronicdisease #spooniesupport #spooniewarrior #chronischkrank #nonprofitorganizations #geneticdisorder #chronicillnesswarrior #raiseawareness #stongertogether

For all the children with a rare disease.
For all the children with special needs.
For all the children of the world.

Let’s fight for them.
Let’s fight for their rights.
Let’s fight for a better future for them.

Today is World Children’s Day.
Today we raise awareness for their rights.
Today we celebrate them, especially those young warriors that are fighting a rare, chronic or genetic disease and teach us to not take things for granted.

To celebrate the child in your life, please share some things they have taught you below.

#worldchildrensday
#Weltkannerdag
#weltkindertag
#specialneedschildren
#specialneeds
#advocacy
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#chronicillness
#chronicallyill
#chronicillnesswarrior
#disabilityawareness
#chronicdisease
#spooniesupport
#spooniewarrior
#chronischkrank
#nonprofitorganizations
#geneticdisorder
#chronicillnesswarrior
#raiseawareness
#stongertogether ...

alanmaladiesraresluxembourg

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Oct 21

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Do you live in Luxembourg? Do you, or one of your Do you live in Luxembourg? Do you, or one of your relatives, live with a rare disease? Then contact our Rare Disease Infoline to: 1. receive information about the disease, the social rights, the available resources and the procedures to follow; 2. be referred to the appropriate services within the country; 3. talk to professionals with experience in the field of rare diseases. Call us on +352 2021-2022 or write to us at infolineMR@alan.lu For more information visit www.alan.lu/infoline #Luxembourg #raredisease #raresdiseases #maladiesrares #selteneerkrankungen #counseling #counselling #psychotherapy #socialworker #socialsupport #chronicillnesssupport #chronicillnesslife #disabilityadvocate #careaboutrare #maladieinvisible #luxemburg #luxemburgo #chronischkrank #unsichtbarekrankheit #seltenekrankheit #santémentale #patientempowerment #patientadvocacy #tousensemble #inclusion

Do you live in Luxembourg?

Do you, or one of your relatives, live with a rare disease?

Then contact our Rare Disease Infoline to:

1. receive information about the disease, the social rights, the available resources and the procedures to follow;

2. be referred to the appropriate services within the country;

3. talk to professionals with experience in the field of rare diseases.

Call us on +352 2021-2022 or write to us at infolineMR@alan.lu

For more information visit www.alan.lu/infoline

#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#counseling
#counselling
#psychotherapy
#socialworker
#socialsupport
#chronicillnesssupport
#chronicillnesslife
#disabilityadvocate
#careaboutrare
#maladieinvisible
#luxemburg
#luxemburgo
#chronischkrank
#unsichtbarekrankheit
#seltenekrankheit
#santémentale
#patientempowerment
#patientadvocacy
#tousensemble
#inclusion ...

alanmaladiesraresluxembourg

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Oct 15

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“Hi, my name is Shirley and yes my parents named “Hi, my name is Shirley and yes my parents named me so because they absolutely adored Shirley Temple, a young talented singer, dancer and actress. The talents did not really adhere to my name 😉 But that’s another story 😉 Today I want to talk about ALAN-Maladies Rares Luxembourg The first time I heard about ALAN was in 2007, shortly before I received my diagnosis. To tell you the truth, I was hesitant to contact the association. Was it worth the try? It sure was! What really impressed me was the determination and the commitment of the team and board members of ALAN. The tagline those days was ”Liewensfreed sichen a fannen”. This is Luxemburgish (by the way, a rare language) for “Searching and finding energy and zest for life”. Today that might sound quite evident, but 20 years ago, when hardly anyone knew how to handle a rare disease, this was a substantial objective. Learning not to give up despite the circumstances and the often gloomy perspectives and learning to set up new and motivating life plans, were essential strategies. Thanks to EURORDIS and multiple important stakeholders in Luxembourg and abroad, a National Plan for Rare Diseases was developed in 2018. The main objective of this plan is to recognise rare diseases as a national public health priority and to define specific national care pathways that will ultimately reduce the burden of these diseases on patients and their families. If you want to know more, please check out www.maladiesrares.lu Now we are in 2020, in the middle of a pandemic. People living with a rare disease face double and triple challenges due to the crisis. Many national plans, as well as the National Plan on Rare Diseases, are on hold. Once again, we have to be patient. We fully understand that priorities had to be shifted, but we truly hope that “WE ALL” soon can resume and progress our engagements under the National Plan for Rare Diseases. Who are “WE ALL”? We are patient advocates, health professionals, researchers, ministry representatives, members of parliament, supporters, friends and many more! We can handle this, if we focus and stay together. Together, we are stronger!” Shirley Feider-Rohen, President of ALAN

“Hi, my name is Shirley and yes my parents named me so because they absolutely adored Shirley Temple, a young talented singer, dancer and actress. The talents did not really adhere to my name 😉
But that’s another story 😉 Today I want to talk about ALAN-Maladies Rares Luxembourg
The first time I heard about ALAN was in 2007, shortly before I received my diagnosis. To tell you the truth, I was hesitant to contact the association.
Was it worth the try?
It sure was!
What really impressed me was the determination and the commitment of the team and board members of ALAN. The tagline those days was ”Liewensfreed sichen a fannen”. This is Luxemburgish (by the way, a rare language) for “Searching and finding energy and zest for life”. Today that might sound quite evident, but 20 years ago, when hardly anyone knew how to handle a rare disease, this was a substantial objective. Learning not to give up despite the circumstances and the often gloomy perspectives and learning to set up new and motivating life plans, were essential strategies.

Thanks to EURORDIS and multiple important stakeholders in Luxembourg and abroad, a National Plan for Rare Diseases was developed in 2018. The main objective of this plan is to recognise rare diseases as a national public health priority and to define specific national care pathways that will ultimately reduce the burden of these diseases on patients and their families. If you want to know more, please check out www.maladiesrares.lu

Now we are in 2020, in the middle of a pandemic. People living with a rare disease face double and triple challenges due to the crisis. Many national plans, as well as the National Plan on Rare Diseases, are on hold. Once again, we have to be patient. We fully understand that priorities had to be shifted, but we truly hope that “WE ALL” soon can resume and progress our engagements under the National Plan for Rare Diseases. Who are “WE ALL”? We are patient advocates, health professionals, researchers, ministry representatives, members of parliament, supporters, friends and many more! We can handle this, if we focus and stay together. Together, we are stronger!”
Shirley Feider-Rohen, President of ALAN ...

alanmaladiesraresluxembourg

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Oct 8

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We all know that our emotions can make, or ruin, o We all know that our emotions can make, or ruin, our day, depending on whether we are feeling sadness, anger, fear, anxiety, joy etc. Our emotions impact our thoughts, our behaviour, and our “performance” in every situation. But we are not always fully aware of our emotions, and even less so the triggers that cause our emotions and the influence our emotions have on our daily life. Given that 3 times more people living with a rare disease report feeling unhappy or depressed than the general population, mental health is clearly an important issue for our community, which is why we offer psychological counselling. In addition, we decided to develop a series of workshops to provide people living with a rare disease with the right tools to take charge of their emotions. The goal is to analyse the origin and consequences of our emotions and give participants different opportunities to gain a deeper understanding of their emotions. The workshops are led by our psychologists, as well as external experts, and cover the following 4 topics: • Understanding emotions • Discovering emotions through your body • Expressing emotions through painting • Exploring emotions through mindfulness The first workshop ran last weekend and the others will be held over the coming weeks. Check out our stories for pictures! Illustration adapted from sceneit via Vecteezy.com #Luxembourg #raredisease #raresdiseases #maladiesrares #selteneerkrankungen #counseling #counselling #mentalhealth #psychologie #santementale #workshop #semainedelasantémentale #psychotherapy #socialworker #socialsupport #spoonielife #patientempowerment #patientadvocacy #patienteducation #chronicillnesssupport #chronicillnesslife #disabilityadvocate #careaboutrare #maladieinvisible #lebenmitbehinderung #luxemburg #tousensemble #inclusion

We all know that our emotions can make, or ruin, our day, depending on whether we are feeling sadness, anger, fear, anxiety, joy etc.

Our emotions impact our thoughts, our behaviour, and our “performance” in every situation. But we are not always fully aware of our emotions, and even less so the triggers that cause our emotions and the influence our emotions have on our daily life.

Given that 3 times more people living with a rare disease report feeling unhappy or depressed than the general population, mental health is clearly an important issue for our community, which is why we offer psychological counselling. In addition, we decided to develop a series of workshops to provide people living with a rare disease with the right tools to take charge of their emotions.

The goal is to analyse the origin and consequences of our emotions and give participants different opportunities to gain a deeper understanding of their emotions. The workshops are led by our psychologists, as well as external experts, and cover the following 4 topics:

• Understanding emotions
• Discovering emotions through your body
• Expressing emotions through painting
• Exploring emotions through mindfulness

The first workshop ran last weekend and the others will be held over the coming weeks. Check out our stories for pictures!

Illustration adapted from sceneit via Vecteezy.com

#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#counseling
#counselling
#mentalhealth
#psychologie
#santementale
#workshop
#semainedelasantémentale
#psychotherapy
#socialworker
#socialsupport
#spoonielife
#patientempowerment
#patientadvocacy
#patienteducation
#chronicillnesssupport
#chronicillnesslife
#disabilityadvocate
#careaboutrare
#maladieinvisible
#lebenmitbehinderung
#luxemburg
#tousensemble
#inclusion ...

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