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

Nous soutenir Se connecter

Accueil
Maladies rares
Nos services
Actualités & événements
À propos d’ALAN
Contactez-nous
Nous soutenir
Se connecter
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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

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Toni Konfettoni is now available in Luxembourg's b

Toni Konfettoni is now available in Luxembourg's bookshops! 📖

Published by @editionsguybinsfeld , written by our president, Anja Di Bartolomeo, and illustrated by Snejana Granatkina, the children's book tells the story of a lively young fox who one day discovers colourful spots on his fur and realises that his arms and legs aren't quite as strong as they used to be.

The book draws many parallels to situations that people with a rare disease unfortunately know all too well. It covers the topics of empathy and inclusion in an age-appropriate way, as the writer Anja Di Bartolomeo explains:

"Just like Toni, children and adults living with a rare disease are unique and courageous. Through openness, acceptance, respect and empathy, we can build a society where everyone has his/her place and can achieve their dreams, regardless of their confetti dots."

Maria lives with a rare disease. For her, and the

Maria lives with a rare disease. For her, and the approximately 30,000 other persons living with a rare disease in Luxembourg, we need a second National Rare Disease Plan to be launched as of 2024.

The first National Rare Disease Plan is coming to an end this year. Through this plan, a number of important projects were implemented to improve the quality of life of persons affected by a rare disease. It is now essential to not drop the ball, and to continue working together to ensure that the affected children and adults have better access to diagnosis, adequate medical treatments, psychosocial support and socio-economic rights.

We asked Maria what her hopes are for her future and that of others living with a rare disease in Luxembourg.

“I hope that research will progress, and that people can receive their diagnosis faster in Luxembourg. I had to go to the Clinique Génétique Salpêtrière in Paris, because my disease was not well known in Luxembourg. I received the diagnosis too late, so there was a delay in starting the physiotherapy that helps a little with my spasticity.”

More details about our campaign on our website: www.alan.lu/1plan

Music by Music_Unlimited (Pixabay)

#Luxembourg
#Letzebuerg
#Luxemburg
#PNMR
#1Plang
#hope
#raredisease
#raresdiseases
#maladierare
#seltenekrankheit
#lebenmitbehinderung
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#specialneeds
#chronicillness
#chronicillnesswarrior
#disabilityadvocate
#disabilityawareness
#invisibledisability
#handicapinvisible
#maladiechronique
#chronischkrank
#inclusion

Noémie lives with a rare disease. For her, and th

Noémie lives with a rare disease. For her, and the approximately 30,000 other persons living with a rare disease in Luxembourg, we need a second National Rare Disease Plan to be launched as of 2024.

The first National Rare Disease Plan is coming to an end this year. Through this plan, a number of important projects were implemented to improve the quality of life of persons affected by a rare disease. It is now essential to not drop the ball, and to continue working together to ensure that the affected children and adults have better access to diagnosis, adequate medical treatments, psychosocial support and socio-economic rights.

We asked Noémie what her hopes are for her future and that of others living with a rare disease in Luxembourg.

“ALS (Amyotrophic Lateral Sclerosis) is an incurable neurodegenerative disease in which every muscle in the body is gradually paralyzed. In the end, one is trapped in one’s own body, and must be artificially fed and ventilated to continue living. Unfortunately, there is still no effective treatment that can cure or stop this neuromuscular disease. My greatest wish is that research in this area makes massive progress, and that an effective drug against this disease is discovered. That would save many lives.”

More details about our campaign on our website: www.alan.lu/1plan

Music by ArtMusic (Pixabay)

#Luxembourg
#Letzebuerg
#Luxemburg
#PNMR
#1Plang
#hope
#raredisease
#raresdiseases
#maladierare
#seltenekrankheit
#lebenmitbehinderung
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#specialneeds
#chronicillness
#chronicillnesswarrior
#disabilityadvocate
#disabilityawareness
#invisibledisability
#handicapinvisible
#maladiechronique
#chronischkrank
#inclusion

Benny lives with Nail-Patella Syndrome (NPS), a ra

Benny lives with Nail-Patella Syndrome (NPS), a rare disease, an artist whose work is focused on the challenges and achievements from living with a rare disease, you can see his posts daily on Instagram @bennyj_artist . For him, and the approximately 30,000 other persons living with a rare disease in Luxembourg, we need a second National Rare Disease Plan to be launched as of 2024.

The first National Rare Disease Plan is coming to an end this year. Through this plan, a number of important projects were implemented to improve the quality of life of persons affected by a rare disease. It is now essential to not drop the ball, and to continue working together to ensure that the affected children and adults have better access to diagnosis, adequate medical treatments, psychosocial support and socio-economic rights.

We asked Benny what his hopes are for his own future and that of others living with a rare disease in Luxembourg.

“ I hope for tech innovation and breakthrough discoveries, alongside simplified processes, less paperwork, and reduced burdens for rare disease patients.”

More details about our campaign on our website: www.alan.lu/1plan

Music by AlexGrohl (Pixabay)

#Luxembourg
#Letzebuerg
#Luxemburg
#PNMR
#1Plang
#hope
#raredisease
#raresdiseases
#maladierare
#seltenekrankheit
#lebenmitbehinderung
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#specialneeds
#chronicillness
#chronicillnesswarrior
#disabilityadvocate
#disabilityawareness
#invisibledisability
#handicapinvisible
#maladiechronique
#chronischkrank
#inclusion

Hannah lives with a rare disease. For her, and the

Hannah lives with a rare disease. For her, and the approximately 30,000 other persons living with a rare disease in Luxembourg, we need a second National Rare Disease Plan to be launched as of 2024.

The first National Rare Disease Plan is coming to an end this year. Through this plan, a number of important projects were implemented to improve the quality of life of persons affected by a rare disease. It is now essential to not drop the ball, and to continue working together to ensure that the affected children and adults have better access to diagnosis, adequate medical treatments, psychosocial support and socio-economic rights.

We asked Hannah what her hopes are for her future and that of others living with a rare disease in Luxembourg.

“As a young chronic pain patient, I hope that in the future I will have the opportunity to receive regular adequate pain therapy in Luxembourg. Pain therapy that can help ease my daily life. Pain therapy that gives me hope for my future. As a chronic pain patient, you need consistent support by a specialized team. Unfortunately, the possibilities for lasting and adequate pain therapy in Luxembourg are still severely limited, even though the demand from pain patients far exceeds the supply. On behalf of many pain patients in Luxembourg, I hope that we can achieve a better future in regards to the treatment of our daily chronic pain.”

More details about our campaign on our website: www.alan.lu/1plan

Music by Ivymusic (Pixabay)

#Luxembourg
#Letzebuerg
#Luxemburg
#PNMR
#1Plang
#hope
#raredisease
#raresdiseases
#maladierare
#seltenekrankheit
#lebenmitbehinderung
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#specialneeds
#chronicillness
#chronicillnesswarrior
#disabilityadvocate
#disabilityawareness
#invisibledisability
#handicapinvisible
#maladiechronique
#chronischkrank
#inclusion

Daniel lives with a rare disease. For him, and the

Daniel lives with a rare disease. For him, and the approximately 30,000 other persons living with a rare disease in Luxembourg, we need a second National Rare Disease Plan to be launched as of 2024.

The first National Rare Disease Plan is coming to an end this year. Through this plan, a number of important projects were implemented to improve the quality of life of persons affected by a rare disease. It is now essential to not drop the ball, and to continue working together to ensure that the affected children and adults have better access to diagnosis, adequate medical treatments, psychosocial support and socio-economic rights.

We asked Daniel’s parents what their hopes are for his future and that of others living with a rare disease in Luxembourg.

“We hope there will be more action: Advancing rare disease research and enrolling patients in clinical trials increases expertise of local specialists and gives earlier access to potential treatments.”

More details about our campaign on our website: www.alan.lu/1plan

Music by Amaksi (Pixabay)

#Luxembourg
#Letzebuerg
#Luxemburg
#PNMR
#1Plang
#hope
#raredisease
#raresdiseases
#maladierare
#seltenekrankheit
#lebenmitbehinderung
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#specialneeds
#chronicillness
#chronicillnesswarrior
#disabilityadvocate
#disabilityawareness
#invisibledisability
#handicapinvisible
#maladiechronique
#chronischkrank
#inclusion

Marielle lives with a rare disease. For her, and t

Marielle lives with a rare disease. For her, and the approximately 30,000 other persons living with a rare disease in Luxembourg, we need a second National Rare Disease Plan to be launched as of 2024.

The first National Rare Disease Plan is coming to an end this year. Through this plan, a number of important projects were implemented to improve the quality of life of persons affected by a rare disease. It is now essential to not drop the ball, and to continue working together to ensure that the affected children and adults have better access to diagnosis, adequate medical treatments, psychosocial support and socio-economic rights.

We asked Marielle what her hopes are for her future and that of others living with a rare disease in Luxembourg.

“My name is Marielle, I am 33 years old and I live with Charcot-Marie-Tooth. I have been a Luxembourgish teacher for 7 years. My disease affects not only my daily life, but also my work. I can’t stand for long periods in front of the whiteboard or in the classroom, and I get tired quickly.
I am lucky to work in a school that supports me a lot. My timetable has been adapted and I participate in working groups for which I can work from home. For two years I have had the “service à temps partiel pour raisons de santé”, but getting there was not easy. I did the regular civil service traineeship (stage fonctionnaire), but the administrative hurdles to get the service were very difficult. I want to work and participate in an active social life, but at my own pace, so that I can lead a dignified life. As should be the case for other people in a similar situation. Work and performance should not be more important than our health.”

More details about our campaign on our website: www.alan.lu/1plan

Music by Coma-Media (Pixabay)

#Luxembourg
#Letzebuerg
#Luxemburg
#PNMR
#1Plang
#hope
#raredisease
#raresdiseases
#maladierare
#seltenekrankheit
#lebenmitbehinderung
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#specialneeds
#chronicillness
#chronicillnesswarrior
#disabilityadvocate
#disabilityawareness
#invisibledisability
#handicapinvisible
#maladiechronique
#chronischkrank
#inclusion

Laurent lives with a rare disease. For him, and th

Laurent lives with a rare disease. For him, and the approximately 30,000 other persons living with a rare disease in Luxembourg, we need a second National Rare Disease Plan to be launched as of 2024.

The first National Rare Disease Plan is coming to an end this year. Through this plan, a number of important projects were implemented to improve the quality of life of persons affected by a rare disease. It is now essential to not drop the ball, and to continue working together to ensure that the affected children and adults have better access to diagnosis, adequate medical treatments, psychosocial support and socio-economic rights.

We asked Laurent what his hopes are for his future and that of others living with a rare disease in Luxembourg.

“I hope for more inclusion of people living with a disability in the planning of public buildings/places.
It’s always good to have well-educated experts on the team, but the successful execution of projects also requires first-hand experience, which you can get from people who are faced with the problems on a daily basis. I can also choose a bed for you, but you would certainly sleep better if you could at least choose the mattress.”

More details about our campaign on our website: www.alan.lu/1plan

Music by AlexGrohl (Pixabay)

#Luxembourg
#Letzebuerg
#Luxemburg
#PNMR
#1Plang
#hope
#raredisease
#raresdiseases
#maladierare
#seltenekrankheit
#lebenmitbehinderung
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#specialneeds
#chronicillness
#chronicillnesswarrior
#disabilityadvocate
#disabilityawareness
#invisibledisability
#handicapinvisible
#maladiechronique
#chronischkrank
#inclusion

Amy lives with a rare disease. For her, and the ap

Amy lives with a rare disease. For her, and the approximately 30,000 other persons living with a rare disease in Luxembourg, we need a second National Rare Disease Plan to be launched as of 2024.

The first National Rare Disease Plan is coming to an end this year. Through this plan, a number of important projects were implemented to improve the quality of life of persons affected by a rare disease. It is now essential to not drop the ball, and to continue working together to ensure that the affected children and adults have better access to diagnosis, adequate medical treatments, psychosocial support and socio-economic rights.

We asked Amy’s mother what her hopes are for her future and that of others living with a rare disease in Luxembourg.

“Amy relies on a lot of help in her everyday life, both at home and in school. It is important that Amy gets the support she needs. Her disability, or her impairment in taking part in society, should not be an obstacle. Amy’s development can continue in an environment where she is well taken care of and challenged, so that she can reach her full potential.”

More details about our campaign on our website: www.alan.lu/1plan

Music by lemonmusicstudio (Pixabay)

#Luxembourg
#Letzebuerg
#Luxemburg
#PNMR
#1Plang
#hope
#raredisease
#raresdiseases
#maladierare
#seltenekrankheit
#lebenmitbehinderung
#patientempowerment
#patientadvocacy
#spooniecommunity
#spoonie
#specialneeds
#chronicillness
#chronicillnesswarrior
#disabilityadvocate
#disabilityawareness
#invisibledisability
#handicapinvisible
#maladiechronique
#chronischkrank
#inclusion

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