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Activités d’ALAN
COVID-19
Journée des Maladies Rares

Rare Disease Day 2021 : Light It Up for Rare Diseases

Activités d’ALAN, Journée des Maladies Rares
Le 28 février 2021 aura lieu la 14e Journée internationale des maladies rares (Rare Disease Day), une journée célébrée dans plus de 100 pays pour sensibiliser sur les maladies rares et leur impact sur la vie des personnes concernées. Cette année, la campagne menée par l’a.s.b.l. ALAN - Maladies Rares Luxembourg et ses partenaires, est axée sur l’illumination de bâtiments phares : un signe de communauté et de solidarité.
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Nouveaux locaux & nouveau site internet

Activités d’ALAN
L’association ALAN – Maladies Rares Luxembourg marque ce début d’année par deux jalons. L’a.s.b.l., qui soutient les familles touchées par une maladie rare, déménage de Bascharage à Kockelscheuer, dans le nouveau bâtiment moderne du bureau d’études Schroeder & Associés SA.
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Rapport d’Activités 2019

Activités d’ALAN
En 2019, ALAN a soutenu près de 400 patients et familles touchés par une maladie rare, représentant plus de 200 maladies différentes. Le nombre de consultations psycho-sociales effectuées par l’équipe pluridisciplinaire d’ALAN en 2019 a augmenté de 40% par rapport à l’année précédente.
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Réponse du gouvernement à notre lettre ouverte

COVID-19
Fin mars, ALAN et plusieurs autres associations ont envoyé une lettre ouverte au gouvernement pour attirer leur attention sur les problèmes spécifiques causés par la pandémie COVID-19 pour les familles, où une personne vit avec une maladie rare ou chronique. Vous trouverez ci-dessous la réponse des ministres, ainsi que notre prise de position à leur réponse.
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Lettre ouverte au gouvernement à propos de la crise sanitaire

COVID-19
Pour les familles d’enfants gravement malades et les personnes avec des maladies rares que nous accompagnons, cette crise sanitaire représente une contrainte supplémentaire dans leur parcours déjà bien difficile. Pour répondre aux questions, inquiétudes et besoins, nous nous sommes associés à plusieurs organisations afin d’envoyer la présente lettre ouverte au gouvernement luxembourgeois.
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ALAN reconnue pour son engagement par prix européen

Activités d’ALAN
Le 18 février 2020, ALAN – Maladies Rares Luxembourg a reçu un Black Pearl Award, qui est remis chaque année par EURORDIS, l’alliance européenne pour les associations de patients atteints d’une maladie rare, afin de reconnaitre des personnes et organisations qui ont fait des contributions exceptionnelles dans le domaine des maladies rares.
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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 2000

Registre de commerce : F 22 42

Agréments : SANTE 2020/01 et 2020/02
(+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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My life with Madelung disease and Strümpell-Lorra My life with Madelung disease and Strümpell-Lorrain disease, by Maria: “Hello, my name is Maria. I am 47 years old and I am a mom of 2 children. I have 2 rare and genetic diseases: Madelung disease, which causes deformation in the wrists, and Strümpell-Lorrain disease, which affects the muscles, causes spasticity, stiffness, loss of balance, lack of energy and pain. These diseases progress over time and cause disabilities. I move around with a walker and a wheelchair for long journeys. I have a baclofen pump. I do physiotherapy 3x a week. I do self-catheterization because my bladder muscle is already affected by the disease and I have been on a morphine treatment for 5 months. When you live with diseases like these, you do not feel understood. When you tell people, "I'm in so much pain, I want to scream. I feel completely drained of my energy”, the response you often get is: “Yes, I have been really tired too lately”. People do not understand how much pain we are in 24/7. When I was first diagnosed, I didn't immediately accept it. Then I thought to myself, "Ok, the disease is here, and it will be with me every day and night for the rest of my life. There is no treatment. What can I do to have a good quality of life?” So, I looked for solutions to that. I am supported by my family, medical team, friends and ALAN. I am not alone. My goal is to keep my autonomy and my status as mother and wife, for as long as possible. I try not to isolate myself, but it gets complicated because I live on the 2nd floor with no elevator. Despite that, I go downstairs to go outside almost every day. Every morning is like a challenge: because I’m in bed all night, when I wake up I’m stiff and it’s very difficult to walk. But I say to myself: "No, you must not give up!”. The start is very slow and difficult. But then I move better. I would even say that my disease is my strength: every little thing that I manage to do during the day is an achievement and I tell myself: “See, you can still do it.” Despite the disease, I want to live, to be valuable. There are still things we can do and achieve. Let’s fight and not give up! Quality of life is more important than longevity."

My life with Madelung disease and Strümpell-Lorrain disease, by Maria:

“Hello, my name is Maria. I am 47 years old and I am a mom of 2 children. I have 2 rare and genetic diseases: Madelung disease, which causes deformation in the wrists, and Strümpell-Lorrain disease, which affects the muscles, causes spasticity, stiffness, loss of balance, lack of energy and pain.

These diseases progress over time and cause disabilities. I move around with a walker and a wheelchair for long journeys. I have a baclofen pump. I do physiotherapy 3x a week. I do self-catheterization because my bladder muscle is already affected by the disease and I have been on a morphine treatment for 5 months.

When you live with diseases like these, you do not feel understood. When you tell people, "I'm in so much pain, I want to scream. I feel completely drained of my energy”, the response you often get is: “Yes, I have been really tired too lately”. People do not understand how much pain we are in 24/7.

When I was first diagnosed, I didn't immediately accept it. Then I thought to myself, "Ok, the disease is here, and it will be with me every day and night for the rest of my life. There is no treatment. What can I do to have a good quality of life?” So, I looked for solutions to that.

I am supported by my family, medical team, friends and ALAN. I am not alone.

My goal is to keep my autonomy and my status as mother and wife, for as long as possible. I try not to isolate myself, but it gets complicated because I live on the 2nd floor with no elevator. Despite that, I go downstairs to go outside almost every day.

Every morning is like a challenge: because I’m in bed all night, when I wake up I’m stiff and it’s very difficult to walk. But I say to myself: "No, you must not give up!”. The start is very slow and difficult. But then I move better.

I would even say that my disease is my strength: every little thing that I manage to do during the day is an achievement and I tell myself: “See, you can still do it.”

Despite the disease, I want to live, to be valuable. There are still things we can do and achieve. Let’s fight and not give up! Quality of life is more important than longevity." ...

alanmaladiesraresluxembourg

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Mar 2

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We are deeply touched by all of your support, your We are deeply touched by all of your support, your messages and the stories of the many people affected by rare diseases. 💜💙💚💗 A huge THANK YOU to everyone that helped make this year’s campaign such a success: @sante.lu Ministère de la Sécurité Social S.A.R. Grand Duchesse Maria Teresa @eurordis @rarediseasedayofficial @villedeluxembourg @chdn_lux @villeesch @fondsbelval @gemeng_mamer Commune de Wiltz @menggemengschengen Ville d'Ettelbruck @cape_ettelbruck @chl_luxembourg @chem_lux @rehazenterluxembourg @philharmonie_lux the Luxembourg media all of the courageous men and women who shared their story to raise awareness for rare diseases all of our members and followers Photos © Henri Goergen, Gilles Zangarini, Françis Verquin, Ben Majerus, CHL, CHEM, Fonds Belval, Commue d’Esch-sur-Alzette #RareDiseaseDay #LightItUp #StrongerTogether #Luxembourg #luxemburg #luxemburgo #raredisease #raresdiseases #maladiesrares #selteneerkrankungen #chronicillness #disabilityawareness #chronischkrank #nonprofitorganizations #geneticdisorder #maladiechronique #patientempowerment #patientadvocacy #patienteducation #awareness

We are deeply touched by all of your support, your messages and the stories of the many people affected by rare diseases. 💜💙💚💗

A huge THANK YOU to everyone that helped make this year’s campaign such a success:
@sante.lu
Ministère de la Sécurité Social
S.A.R. Grand Duchesse Maria Teresa
@eurordis
@rarediseasedayofficial
@villedeluxembourg
@chdn_lux
@villeesch
@fondsbelval
@gemeng_mamer
Commune de Wiltz
@menggemengschengen
Ville d'Ettelbruck
@cape_ettelbruck
@chl_luxembourg
@chem_lux
@rehazenterluxembourg
@philharmonie_lux
the Luxembourg media
all of the courageous men and women who shared their story to raise awareness for rare diseases
all of our members and followers

Photos © Henri Goergen, Gilles Zangarini, Françis Verquin, Ben Majerus, CHL, CHEM, Fonds Belval, Commue d’Esch-sur-Alzette

#RareDiseaseDay
#LightItUp
#StrongerTogether
#Luxembourg
#luxemburg
#luxemburgo
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#chronicillness
#disabilityawareness
#chronischkrank
#nonprofitorganizations
#geneticdisorder
#maladiechronique
#patientempowerment
#patientadvocacy
#patienteducation
#awareness ...

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 ...

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