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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 2000Registre de commerce : F 22 42Agréments : SANTE 2021/19 et 2020/02

(+352) 266 112 - 1info@alan.lu

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

CCPL LU95 1111 0004 2638 0000
BCEE LU89 0019 1300 5184 5000
BLUX LU30 0080 3239 1490 2001

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My name is Nathalie Scheer-Pfeifer, and I am the p

My name is Nathalie Scheer-Pfeifer, and I am the president of the non-profit Wäertvollt Liewen, which was founded in 2012. I am married, a mother and since 2000 I have been living with ALS (amyotrophic lateral sclerosis). This incurable disease has damaged the nerves that control my body.

In the advanced stage of ALS, many people think that you have hearing impairment, because you can’t speak and the facial expressions are weaker. I have learned to take the reactions with humour, because they are just a sign of the insecurity. Most people are overwhelmed when the person in front of them doesn’t seem to respond. Or it’s lack of knowledge, patience, sensitivity or simply lack of time.

One very important aspect when living with a disease like ALS, is maintaining a normal routine, with its ups and downs. Unfortunately, as a sick person, people tend to make decision FOR you, instead of talking to you. Even many “well-intentioned” actions are often patronizing. After all, “helping” and “letting oneself be helped” must be learned. But all this requires a lot of discipline and personal responsibility from everyone involved.

As a chronically critically ill person, if you want to live at home with your loved one, you are dependent on interdisciplinary and well-coordinated care. Then, a round-the-clock availability of specially trained confidants is indispensable. Of course, our life together has changed drastically due to the constant presence of third parties, but without them there would be no family life for us today.

And, thus, we live our everyday life together with seven wonderful people, my “girls”, whom I trust completely and who understand me without words. They are my extended arms and legs. This way I can be in control of my life.

A huge thank you to Nathalie and her non-profit Wäertvollt Liewen for being part of our “Talk TO me, not ABOUT me” (“Schwätz mat mir, net iwwert mech” in Luxembourgish) campaign – a call for respect, empathy and open-mindedness. Details about the campaign are on our website (link in bio)

For more information about Wäertvollt Liewen, please visit www.waertvollt-liewen.lu

Music by Alex MakeMusic (Pixabay)

Be open-minded – you might put a smile on someon

Be open-minded – you might put a smile on someone’s face, maybe even on your own 😉

Abby lives with a rare disease, which makes everyday tasks that most of us don’t even think about much harder for her. But that won’t stop her from pursing her goals and doing the things she loves 🐎🐾🎤🏊‍♀️

Thank you, Abby, for being part of our “Talk TO me, not ABOUT me” (“Schwätz mat mir, net iwwert mech” in Luxembourgish) campaign – a call for respect, empathy and open-mindedness.

Support Abby and the campaign by sharing her reel!

Leave us a comment about the prejudices that you have experienced and overcome.

And if you are feeling inspired and creative, why not create your own reel and sharing it with the #schwätzmatmir?

All the details about the campaign are on our website (link in bio)

Music by prazkhanal (Pixabay)

#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#chronicillnesswarrior
#disabilityawareness
#maladiechronique
#chronischkrank
#inclusion
#dontjudge
#beopenminded

You never know what a person is going through. Man

You never know what a person is going through. Many rare diseases are invisible. Let’s not judge a book by its cover…

A huge thank you to Denis and his non-profit @den_i.lu for being part of our “Talk TO me, not ABOUT me” (“Schwätz mat mir, net iwwert mech” in Luxembourgish) campaign – a call for respect, empathy and open-mindedness.

Support Denis and the campaign by sharing his reel!

Leave us a comment about the prejudices that you have experienced and overcome.

And if you are feeling inspired and creative, why not create your own reel and sharing it with the #schwätzmatmir?

For more information about the non-profit den-i, please visit https://den-i.lu/

All the details about the campaign are on our website (link in bio)

Music by bandersn4tch (Pixabay)

#Luxembourg
#MarfanSyndrome
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#chronicillnesswarrior
#disabilityawareness
#maladiechronique
#chronischkrank
#inclusion
#dontjudge
#beopenminded

It’s hard for most of us to imagine what it’s

It’s hard for most of us to imagine what it’s like to live with chronic pain, where even opiates are not the magic pill 💊 that elevates it all.

Hannah lives with a rare form of Spondylolisthesis, which has led to countless surgeries and chronic pain. Sure, a young woman being chronically ill doesn’t fit with in most people’s ideal of the world. But rather than ridiculing or alienating her, a little more sensitivity and compassion wouldn’t hurt. Right?

Thank you, Hannah, for being part of our “Talk TO me, not ABOUT me” (“Schwätz mat mir, net iwwert mech” in Luxembourgish) campaign – a call for respect, empathy and open-mindedness.

Support Hannah and the campaign by sharing her reel!
Leave us a comment about the prejudices that you have experienced and overcome.
And if you are feeling inspired and creative, why not create your own reel and sharing it with the #schwätzmatmir?

All the details about the campaign are on our website (link in bio)

Music by Coma-Media (Pixabay)

#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#chronicpain
#spondylolisthesis
#invisibledisability
#chronicillnesswarrior
#disabilityawareness
#maladiechronique
#chronischkrank
#inclusion
#dontjudge
#beopenminded

Do you dare? “Meet Me If You Dare” is part of

Do you dare?

“Meet Me If You Dare” is part of our “Talk TO me, not ABOUT me” (“Schwätz mat mir, net iwwert mech” in Luxembourgish) campaign – a call for respect, empathy and open-mindedness.

The song is performed by ABBY LANE, a band that came together in the framework of a song contest launched by respect.lu, an organisation that fights violent radicalisation in Luxembourg.

A huge thank you to all of our friends and partners involved in the creation of this song & video!!

Find all the details about the campaign on -> https://alan.lu/schwaetzmatmir/

Song title: Meet me if you dare by ABBY LANE
Composer: Dan Theisen
Lyricists: Abby Scheidweiler, Julie Darne-Scheidweiler, Dan Theisen
Vocals: Abby Scheidweiler
Background vocals: Julie Darne-Scheidweiler, Dan Theisen
Acoustic guitar: Dan Theisen
Bass guitar: Arsène Salvestrin
Percussion: Al Ginter
Mixed and mastered by Arsène Salvestrin
Recording sponsored by respect.lu
Winner of the Respect Song Contest 2021
Music video: @lukas_grevis
Cover artwork: @sophiemarguephotography & ALAN - Maladies Rares Luxembourg

#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#chronicillnesswarrior
#disabilityawareness
#maladiechronique
#chronischkrank
#inclusion
#dontjudge
#beopenminded

Volunteering has been at the core of ALAN for more

Volunteering has been at the core of ALAN for more than 20 years. It is an essential part in our efforts to fulfil our mission, as we would not be able to organise as many events and activities for our members if it were not for the invaluable support from our volunteers.

Due to the pandemic, many of the volunteering activities were stopped or reduced for the past 2 years. But our volunteers never lost their motivation, and we are all excited that activities have picked up again.

So, it was the perfect time to organise another “Soirée Bénévoles” – an evening to bring the team and volunteers together for a workshop and relaxed dinner.

A huge THANK YOU to all of our volunteers who offer their time, expertise and kindness to support the rare disease community.

If you’d like more information about the volunteering programme at ALAN, please visit: https://alan.lu/become-a-volunteer/

#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#chronicillness
#disabilityawareness
#chronicdisease
#spooniesupport
#chronischkrank
#nonprofitorganizations
#geneticdisorder
#maladiechronique
#rarediseaseday
#volunteering
#stongertogether
#benevolat
#specialneedschildren
tousensemble
inclusion

🦮 🐎 🐐 🐓 🐖 🐇 Animal-assisted the

🦮 🐎 🐐 🐓 🐖 🐇

Animal-assisted therapy is an important tool for the psychological counselling of kids that are affected by a rare disease because it can:

* reduce anxiety

* provide an escape from their daily routine

* reduce pain

* encourage solution-oriented thinking

* improve social skills

* build self-esteem

* improve motor skills

* help regulate emotions

Follow us for more content on rare diseases, patient empowerment and mental health

A big THANK YOU to our friends from @ate_lux , ASA asbl and Bricher Paerdsstall for making all of this possible 🙏

Music by Bensound.com

#Luxembourg
#raredisease
#rarediseases
#maladiesrares
#selteneerkrankungen
#chronicillness
#chronischkrank
#geneticdisorder
#maladiechronique
#specialneeds
#specialneedschildren
#spoonielife
#mentalhealth
#counselling
#psychotherapy
#animalassistedtherapy
#tiergestütztepädagogik
#erlebnispädagogik
#zootherapie
#mediationanimale
#chiendassistance
#assistenzhund
#dogtherapy
#therapydog
#horsetherapy
#reittherapie
#equitherapie

Last year, we supported 562 patients and families.

Last year, we supported 562 patients and families. This represents 241 different rare diseases and is an increase of 40% compared to 2020.

Our 2021 Annual Report has been published and was presented at our recent General Assembly!

Why did we see this increase in the number of requests for support? What else did ALAN focus on in 2021? Who are the new members of our Board of Directors?

Find out in our latest article:
https://alan.lu/annual-report-2021/

The full Annual Report (in French) is available here : https://alan.lu/about-us/publications/

#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#counseling
#counselling
#psychotherapy
#socialworker
#socialsupport
#spoonielife
#chronicillnesssupport
#chronicillnesslife
#disabilityadvocate
#careaboutrare
#maladieinvisible
#lebenmitbehinderung
#luxemburg
#luxemburgo
#benevolat
#specialneedschildren
#tousensemble
#inclusion

With the amount of support, solidarity and encoura

With the amount of support, solidarity and encouragement that we have seen throughout the last month, there is only one thing left to say: THANK YOU 💚💗💙💜

- to our partners who illuminated their buildings for the Global Chain of Lights
- to the Ministry of Health and the @chdn_lux for the great collaboration on this campaign
- to the associations, councils and other partners who have shared material on social media to raise awareness about rare diseases
- to @sophiemarguephotography , @cflinfos and @bcee_spuerkeess , who made our «RaReflections» photo expo a reality
- to all the wonderful people that opened up and became part of our photo exhibition or gave testimonials about their lives with a rare disease
- to the Luxembourgish journalists and media outlets who supported our community
- to everyone who participated in our campaign by liking, sharing or commenting on our posts

Each and every one of you has helped raise awareness about rare diseases and amplify the voice of our community. 📢

We are already looking forward to next year

#rarediseaseday
#globalchainoflights
#lightupforrare
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#patientempowerment
#patientadvocacy
#patienteducation
#patientadvocate
#spooniecommunity
#chronicillnesscommunity
#awareness

© 2021 ALAN. Mentions légales

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