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Freizeitaktivitäten

Stärken Sie Ihr Wohlbefinden

ALAN bietet seinen Mitgliedern, welche mit einer seltenen Erkrankung leben, eine Reihe angepasster Freizeit- und Sportaktivitäten an, um ihr Wohlbefinden, ihr Selbstvertrauen und ihr Selbstwertgefühl zu stärken.

Body mind balance

Die von Dunja Grunow angebotenen Kurse basieren auf einer Kombination von Yogastellungen, sanfter Gymnastik und Entspannungsübungen. Hierdurch können Sie dem Alltagsstress für einen Moment entfliehen und sich voll und ganz in einem geschützten therapeutischen Rahmen entspannen.

  • Jeden Montag von 18:30 bis 19:30 online (Atem- und Entspannungsübungen)
  • Jeden Mittwoch von 9:30 bis 10:30 online und im Mamerhaff (14, rue Henri Kirpach, L-8237 Mamer) (Entspannungsübungen, Yogaposen, sanfte Gymnastik)

Vierteljährliches Angebot.

Anmeldungen und Informationen per Telefon (+352) 266 112 – 1 oder e-mail info{a}alan.lu

Zesummen an d’Schwämm

Unsere Schwimmaktivitäten werden von spezialisierten Physiotherapeuten betreut und ermöglichen es Ihnen, das Wasser zu genießen und gleichzeitig Ihre allgemeine Fitness und Ihr Wohlbefinden zu verbessern.

  • Aquagymnastik: Dieser Kurs kann Ihnen helfen, Ihre Ausdauer auf gelenkschonende Weise zu verbessern.
  • Schwimmen: Teilnehmer, die autonom sind, können in einem geschützten und sicheren Umfeld im großen Becken schwimmen.

Wann? Jeden Donnerstag von 17:00 bis 19:00 Uhr, außer während den Schulferien und an Feiertagen

Wo? Im Rehazenter Kirchberg

Anmeldungen und Informationen per Telefon (+352)266 112-1 oder E-Mail info{a}alan.lu

Reittherapie

In Zusammenarbeit mit der Association de Thérapie Equestre (ATE) in Mondercange bietet ALAN Schnupperkurse in der Reittherapie an. Diese Kurse stehen den Kindern, Jugendlichen und jungen Erwachsenen, welche Mitglieder bei ALAN sind, offen.

Die Ziele dieser Schnupperkurse sind:

  • Ihre Muskelkraft und Koordination zu verbessern in dem die Kinder das Pony führen, streicheln oder bürsten.
  • Ihr Gleichgewicht durch Spiele auf dem Pferderücken zu verbessern
  • vor allem viel Spaß zu haben.

Die Reitherapiekurse werden an bestimmten Nachmittagen während der Schulferien organisiert. Unsere jungen Mitglieder erhalten einige Wochen im Voraus eine Einladung zur Teilnahme.

Melden Sie sich bei uns, wenn Sie Fragen haben oder Unterstützung brauchen

Über Uns

ALAN – Maladies Rares Luxembourg ist eine gemeinnützige Vereinigung (association sans but lucratif – a.s.b.l) welche 1998 gegründet wurde und seit 2000 offiziell als gemeinnützig anerkannt ist.

ALAN’s Mission besteht darin die Lebensqualität von Menschen und Familien, die von einer seltenen Erkrankung betroffenen sind, zu verbessern.

ALAN wird vom Gesundheitsministerium, AFM-Téléthon und großzügigen Spendern unterstützt.

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

Newsletter

Folgen Sie Uns

alanmaladiesraresluxembourg

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Mai 20

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Our 2020 Annual Report is out now! Take a look to Our 2020 Annual Report is out now! Take a look to find out how we were able to support our rare disease community in this very particular year. Link in bio #Luxembourg #annualreport #rapportannuel #raredisease #raresdiseases #maladiesrares #selteneerkrankungen #chronicillness #chronicallyill #disabilityawareness #chronicdisease #spooniesupport #notalldisabilitiesarevisible #chronischkrank #nonprofitorganizations #geneticdisorder #maladiechronique #rarediseaseday #raresyndrome #volunteering #stongertogether

Our 2020 Annual Report is out now!

Take a look to find out how we were able to support our rare disease community in this very particular year.

Link in bio

#Luxembourg
#annualreport
#rapportannuel
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#chronicillness
#chronicallyill
#disabilityawareness
#chronicdisease
#spooniesupport
#notalldisabilitiesarevisible
#chronischkrank
#nonprofitorganizations
#geneticdisorder
#maladiechronique
#rarediseaseday
#raresyndrome
#volunteering
#stongertogether ...

alanmaladiesraresluxembourg

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Apr 1

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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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Mrz 2

Open
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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Feb 22

Open
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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Feb 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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Dez 12

Open
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 ! ...

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