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The “Talk TO me, not ABOUT me” awareness campaign

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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 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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Thank you all for the support and love you have sh

Thank you all for the support and love you have shown us in 2022

We wish everyone very happy holidays among their loved ones and all the best for the new year.❄🎄❤️

Please note that our offices, including the Infoline Maladies Rares Luxembourg, will be closed from the 26th of December 2022 to the 2nd of January 2023.

Thank you to the talented Snejana Granatkina who designed our beautiful christmas card

#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#merrychristmas
#happyholidays
#joyeusefetes
#schoenefeiertage
#scheifeierdeeg

After a 2-year break, we were thrilled to be able

After a 2-year break, we were thrilled to be able to organise our Christmas Party again 🎄

A big thank you to
- the young ladies from the CS Fola Esch football club who volunteered their time to do activities with the kids
- the restaurant staff for the wonderful service and delicious food
- our amazing photographer Henri Goergen

◀️ Swipe left

(c) ALAN / Henri Goergen

#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#chronicillness
#christmasparty
#benevolat
#tousensemble
#diversity
#disabilityadvocate
#inclusion
#disabilityawareness
#chronicdisease
#chronischkrank
#nonprofitorganizations
#volunteering
#stongertogether

We are only 100 days out from Rare Disease Day!

We are only 100 days out from Rare Disease Day!

For all of you that, just like us, can’t wait to see what this year’s campaign has in store, here is the first teaser: the @rarediseasedayofficial 2023 video !!

#rarediseaseday
#shareyourcolours
#lightupforrare
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#patientempowerment
#patientadvocacy
#patienteducation
#patientadvocate
#healthcareeducation
#advocacy
#spoonie
#geneticdisorder
#maladiechronique
#raresyndrome
#volunteering
#stongertogether
#chronicillnesscommunity
#geneticdisease
#awareness
#inclusive

In Dunja’s course you can let go of your stress

In Dunja’s course you can let go of your stress and worries for a moment and completely relax in a protected and therapeutic environment.
Anyone affected by a rare disease can participate, regardless of their mobility, because the course is individually adapted to everyone’s physical capabilities.

We offer virtual & physical courses!

On Monday evenings we do relaxation and breathing exercises.
On Wednesday mornings we do relaxation exercises, yoga and gentle gymnastics exercises.

More details on www.alan.lu/recreational-activities/

Music by Coma-Media (Pixabay)

#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#chronicillness
#chronicallyill
#disabilityawareness
#chronicdisease
#spooniesupport
#invisibledisability
#chronischkrank
#nonprofitorganizations
#yoga
#relaxationtechniques
#breathingexercices
#yogacommunity
#yogaisforeverybody
#patientempowerment

These dogs are simply magical 🪄 A huge THANK YO

These dogs are simply magical 🪄
A huge THANK YOU to ASA asbl & Ms Nelly Nash for this wonderful collaboration ♥️

Music by RomanBelov

#Luxembourg
#raredisease
#dogtherapy
#therapiehund
#chiendassistance
#Luxembourg
#raredisease
#raresdiseases
#maladiesrares
#selteneerkrankungen
#assistancedog
#chiendassistance
#assistenzhund
#dogtherapy
#dogtherapist
#therapydog
#therapydogs
#counseling
#counselling
#psychotherapy
#socialworker
#socialsupport
#spoonielife
#chronicillnesssupport
#chronicillnesslife
#disabilityadvocate
#maladieinvisible
#lebenmitbehinderung

Not being taken seriously when you know something

Not being taken seriously when you know something is “wrong” with your body, has got to be one of the most frustrating aspects about living with a rare disease. It often takes years before you get the right diagnosis. In the meantime, there’s no shortage of unsolicited advice. Turns out though, your particular exercise/diet/stress management technique is unlikely to cure my genetic, rare disease 😉

A huge thank you to Jessica and her non-profit @edsletzebuerg 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 Jessica 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 John Bartmann (Pixabay)

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

As a parent, you get judged for everything. If you

As a parent, you get judged for everything. If your child behaves a bit differently from “the norm”, this happens even more often. Maybe we can follow our children’s example, and just approach each other, ask questions and talk to each other...

Thank you, Nataliia & Daniel, 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 Nataliia, Daniel, and the campaign by sharing their 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 amaksi (Pixabay)

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

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

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