English
Deutsch

Accueil
Maladies rares
Nos services
Activités & événements
À propos d’ALAN
Contactez-nous

Nous soutenir Connexion

Accueil
Maladies rares
Nos services
Activités & événements
À propos d’ALAN
Contactez-nous

Nous soutenir Connexion

Accueil
Accueil
Maladies rares
Nos services
Actualités & événements
À propos d’ALAN
Contactez-nous
Contactez-nous
Nous soutenir
Qu’est-ce qu’une maladie rare ?
Vivre avec une maladie rare
Plan National
Témoignages
Ressources
Activités récréatives
Mobilisation
Actualités
Événements
Galerie
Organisation
Conseil d’Administration
L’équipe opérationnelle
Conseil Scientifique
Publications
Connexion
English
Deutsch

Plan du site

Pages

À propos
- Nos vision, mission et valeurs
- Organisation
- Conseil d’Administration
- L’équipe opérationnelle
  - Equipe
  - Equipe
  - Equipe
  - Equipe
  - Equipe
  - Equipe
  - Equipe
  - Equipe
  - Equipe
  - Equipe
  - Equipe
  - Equipe
- Conseil Scientifique
- Publications
Activités récréatives
Actualités
Archives Newsletter
Campagne « Héros invisibles »
Consultations et soutien
Contactez-nous
Coordinateur de l’alliance nationale maladies rares
Devenez bénévole
Devenez membre
Dons
Événements
Galerie
- 20ème anniversaire
- Ateliers Chiens
- Ateliers ferme pédagogique
- Fête de noël 2022
- Fête familiale 2019
- Fête familiale 2021
- Fête familiale 2022
- Finissage RaReflections
- Inauguration du nouveau site à Erpeldange
- Inauguration Kockelscheuer
- Rare Disease Day 2021 – Light It Up
- Rare Disease Day 2022 – Global Chain of Lights
- RaReflections Vernissage
- Soirée quizz 2020
- Thérapie équestre
La campagne « Schwätz mat mir, net iwwert mech »
Maladies rares Luxembourg
Mentions légales
Mobilisation
Mon profil
Nous soutenir
Plan du site
Plan National
Politique de cookies
Politique de protection des données
Qu’est-ce qu’une maladie rare ?
Rare Disease Day 2022
Ressources
Témoignages
- Témoignages
- Témoignages
- Témoignages
- Témoignages
- Témoignages
- Témoignages
- Témoignages
- Témoignages
Vivre avec une maladie rare

Articles par catégorie

Catégorie : Activités d’ALAN
Catégorie : COVID-19
Catégorie : Journée des Maladies Rares
- Journée Internationale des Maladies Rares 2020

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

EN FR DE

Menu

Acceuil
Maladies rares
Plan du site
Nos services
Actualités & événements
À propos d’ALAN
Contactez-nous
Nous soutenir
Plan du site
Consultations et soutien
Nos vision, mission et valeurs

Newsletter

Nom *

Prénom *

Email *

Archives Newsletter

Checkboxes *

J’ai lu et j’accepte les conditions de la politique de confidentialité d’ALAN.

Comment

Suivez nous

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

© 2021 ALAN. Mentions légales

Made with ❤ by Quattro Creative.

Accessibility by WAH

Passer au contenu
Plan du site

X