Kontakt
ALAN
Anmelden
 

Nachrichten

Die wichtigsten aktuelle Nachrichten für die Luxemburger Gemeinschaft der seltenen Erkrankungen
Alle
ALANs Aktivitäten
Covid-19
Tag der seltenen Erkrankungen

Umfrage: COVID-19 Impfung von Personen mit einer seltenen Erkrankung

Covid-19
ALAN wollte die Situation, der mit seltenen Krankheiten lebenden Personen im Zusammenhang mit der Impfung besser kennenlernen und mehr über die Wirksamkeit der nationalen Impfstrategie für gefährdete Personen erfahren. Zu diesem Zweck führte ALAN im April 2021 eine anonyme Umfrage unter Menschen welche in Luxemburg mit einer seltenen Erkrankung leben durch.
Mehr lesen

Jahresbericht 2020

ALANs Aktivitäten
Im Jahr 2020 unterstützte die gemeinnützige Vereinigung ALAN – Maladies Rares Luxembourg mehr als 400 Patienten und Familien, die von einer seltenen Erkrankung betroffen sind, viele davon gehören zur COVID-19-Risikogruppe. Neben dem psychosozialen Beratungsdienst und den angepassten Sportaktivitäten, hat sich die Vereinigung stark auf ihre Arbeit im Bereich der Interessenvertretung, der Sensibilisierung und der Stärkung der Patientenkompetenzen konzentriert.
Mehr lesen

Rare Disease Day 2021 – Light It Up for rare diseases

ALANs Aktivitäten, Tag der seltenen Erkrankungen
Am 28. Februar 2021 wird in mehr als 100 Ländern der 14. Internationale Tag der Seltenen Erkrankungen (Rare Disease Day), gefeiert. An diesem Tag kommen betroffene Patienten und Familien, Pfleger, Mediziner, Politiker und andere Bürger zusammen, um über seltene Erkrankungen aufzuklären und ihre Solidarität zu zeigen. Dieses Jahr liegt der Schwerpunkt der Kampagne von ALAN und seinen Partnern auf der Beleuchtung öffentlicher, symbolischer Gebäude und Denkmäler, mit dem Ziel ein Zeichen der Gemeinschaft & Solidarität zu setzten.
Mehr lesen

Neue Adresse & neue Website

ALANs Aktivitäten
ALAN – Maladies Rares Luxembourg startet mit gleich zwei Meilensteinen ins neue Jahr. Die gemeinnützige Vereinigung, welche Familien, die von einer seltenen Erkrankung betroffen sind, unterstützt, zieht von Bascharage nach Kockelscheuer ins neue, moderne Gebäude des Ingenieurbüros Schroeder & Associés SA.
Mehr lesen

Jahresbericht 2019

ALANs Aktivitäten
Im Jahr 2019 unterstützte ALAN fast 400 Patienten und Familien, die von einer seltenen Erkrankung betroffen sind, was mehr als 200 verschiedene Krankheiten ausmacht. Im Vergleich zum Vorjahr stieg die Anzahl der psychosozialen Beratungsgespräche im Jahr 2019 um 40%.
Mehr lesen

Antwort der Regierung auf unseren offenen Brief

Covid-19
Ende März schickte ALAN, zusammen mit einer Reihe anderer Vereinigungen, einen offenen Brief an die Regierung, um diese auf bestimmte Probleme aufmerksam zu machen, welche durch die COVID-19-Pandemie bei Familien verursacht wurden, bei denen eine Person mit einer seltenen oder schweren chronischen Krankheit lebt. Nachstehend finden Sie die Antwort der Minister sowie unsere Stellungnahme hierzu.
Mehr lesen

Offener Brief an die Regierung bezüglich der Gesundheitskrise

Covid-19
Durch die aktuelle Gesundheitskrise ist der Alltag für Familien mit schwerkranken Kindern und für Menschen mit seltenen Erkrankungen, welche wir unterstützen, noch schwieriger geworden. Um auf deren Fragen, Bedenken und Bedürfnisse einzugehen, haben wir uns mit mehreren Organisationen zusammengeschlossen, um folgenden Brief an die luxemburgische Regierung zu senden.
Mehr lesen

Abonnieren Sie unsere Newsletter um auf dem neuesten Stand zu bleiben

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

View

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 ...

alanmaladiesraresluxembourg

View

Mai 20

Open
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

View

Apr 1

Open
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

View

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

View

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

View

Feb 2

Open
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 ...

© 2020 ALAN. Impressum
Made with ❤ by Quattro Creative.
Font Resize
Contrast
Accessibility by WAH
X