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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 ...

alanmaladiesraresluxembourg

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Feb 25

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Luxembourg lights up for rare diseases!! Last nig

Luxembourg lights up for rare diseases!!

Last night, Luxembourg’s Minister of Health, Paulette Lenert, Luxembourg City alderman, Patrick Goldschmidt, and our president, Shirley Feider-Rohen, officially launched our “Light It Up” campaign for Rare Disease Day at the water tower in Gasperich.

In her speech, Paulette Lenert said:

“Rare diseases are an important issue for the patients, their relatives, the healthcare services and the government. We are well aware of the problems and challenges the patients face. To fight against rare diseases, the Ministry of Health is committed - together with actors on the ground - to a national plan, the National Plan for Rare Diseases (PNMR).

We want to ensure that people with a rare disease and their loved ones have equal access to diagnosis, appropriate medical and psycho-social care, and broad and equalitarian health and dependency insurance coverage.

It is particularly important to me that those affected by a rare disease have the opportunity to fulfil their educational, professional and personal needs and desires.”

Thank you, Ms. Lenert
Thank you Mr. Goldschmidt
Thank you @sante.lu
Thank you @villedeluxembourg

Photos © @henrigoergen

#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 24

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Rare Disease Day is almost here.🎉 To raise awa

Rare Disease Day is almost here.🎉

To raise awareness for rare diseases and show our combined strength as a community 💪, hundreds of buildings 🏢 around the world will be lit up in the colours of the #rarediseaseday

We can’t wait to share pictures of the buildings that are lit up in #Luxembourg. Stay tuned!

In the meantime, ⬅️ swipe left for some stats & facts about rare diseases.

#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#patientempowerment
#patientadvocacy
#patienteducation
#patientadvocate
#healthcareeducation
#advocacy
#specialneeds
#nonprofit
#nonprofitorganization
#raiseawareness
#chronicillnessawareness
#spooniecommunity
#chronicillnesscommunity
#geneticdisease
#awareness
#inclusive ...

alanmaladiesraresluxembourg

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Feb 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." ...

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 ...

alanmaladiesraresluxembourg

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Dec 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 ! ...

alanmaladiesraresluxembourg

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Dec 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." ...

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 ...

alanmaladiesraresluxembourg

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Oct 30

Open

Many types of cancer are considered "rare", especi

Many types of cancer are considered "rare", especially those affecting children.

So, when our partners from @chdn_lux launched their #Gléckssteen (“happiness stone”) campaign to raise awareness and solidarity for those affected by cancer, we didn’t think twice about joining them.

We painted stones with our children to:
- show support for everyone who’s fighting cancer, their families and loved ones,
- send a message of hope, strength and community,
- commemorate all those we have lost to a chronic disease.

Because, together we are stronger !!

⬅️ Swipe left to see all the pictures

#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#awareness
#patientadvocate
#raiseawareness
#chronicillnessawareness
#solidarité
#cancer
#fightcancer
#krebs
#cancerawareness
#rarecancer
#tousensemble
#strongertogether
#chronicdisease ...

alanmaladiesraresluxembourg

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Oct 21

Open

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 ...

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(+352) 266 112 - 1

info@alan.lu

Parc Luxite
13, rue de l'Innovation
L-1896 Kockelscheuer

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(+352) 266 112 - 1

info@alan.lu

Parc Luxite 13, rue de l'Innovation L-1896 Kockelscheuer

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Parc Luxite
13, rue de l'Innovation
L-1896 Kockelscheuer