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Covid-19
Rare Disease Day

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

Covid-19
ALAN wanted to better understand how people with a rare disease view the COVID-19 vaccination as well as the effectiveness of the strategy for vulnerable individuals. To this end, ALAN ran an anonymous survey amongst the members of the association and the rare disease community in Luxembourg. The results of this survey have now been published.
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Annual Report 2020

ALAN activities
In 2020, ALAN supported more than 400 patients and families affected by a rare disease, many of whom are particularly vulnerable to COVID-19. In addition to its psycho-social consultation services and adapted physical activities, ALAN primarily focused its efforts on national and international advocacy, awareness-raising and patient empowerment.
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New location & new website

ALAN activities
ALAN marks the start of the new year with two milestones. The non-profit organisation, which supports families affected by a rare disease, is moving from Bascharage to Kockelscheuer, into the new, modern building of the engineering firm Schroeder & Associés SA.
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Annual Report 2019

ALAN activities
In 2019, ALAN supported nearly 400 patients and families affected by a rare disease, which represents more than 200 different diseases. The number of psychosocial consultations carried out by the multidisciplinary team in 2019 increased by 40% compared to the previous year.
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Government’s response to our open letter

Covid-19
At the end of March, ALAN and a number of other association sent a joint open letter to the government to draw their attention to specific issues caused by the COVID-19 pandemic for families, where one person lives with a rare or severe chronic disease. Below you can find the Ministers’ response as well as our position statement to their response.
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Open letter to the government regarding the health crisis

Covid-19
For families with children and people with a serious and/or rare disease, which we represent, the current health crisis represents an additional burden in their already difficult journey. To respond to their questions, concerns and needs, we have partnered with several organizations to send the following open letter to the Luxembourg government.
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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 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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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

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May 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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Mar 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

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 ...

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