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RaReflections Finissage

@ Spuerkeess - 28/02/23 - (c) Henri Goergen / ALAN

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Über Uns

ALAN – Maladies Rares Luxembourg ist eine gemeinnützige Vereinigung (association sans but lucratif – a.s.b.l) welche 1998 gegründet wurde und seit 2000 offiziell als gemeinnützig anerkannt ist.

ALAN’s Mission besteht darin die Lebensqualität von Menschen und Familien, die von einer seltenen Erkrankung betroffenen sind, zu verbessern.

ALAN wird vom Gesundheitsministerium, AFM-Téléthon und großzügigen Spendern unterstützt.

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

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BLUX LU30 0080 3239 1490 2001

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Ich habe die Datenschutzerklärung von ALAN gelesen und akzeptiere sie

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We are very happy and proud to announce that our c

We are very happy and proud to announce that our consultation service has received the “EU-Promising Practice in the field of Mental Health” label from the European Commission in recognition of its holistic approach to psycho-social support of people affected by a rare diseases.

More information on the news section of our website www.alan.lu

Today, on Rare Disease Day, our president @anjadib

Today, on Rare Disease Day, our president @anjadibartolomeo pleads for more tolerance and empathy:

“Am Laf vun de leschte Joeren gouf am Beräich vun de Rare Krankheeten e bedeitende Wee zréckgeluecht. Haut hu mir e Plan National Maladies Rares 1, deen e wichtegen Impakt fir all déi Betraffen huet- an de Plan National Maladies Rares 2 steet an de Startlächer. Um Plang vun Toleranz an Akzeptanz ass allerdengs nach Loft no uewen.

Haut ass den internationalen Dag vun de Rare Krankheeten. Mee wat heescht eigentlech rar? Siele Krankheeten sinn nämlech guer net esou rar, wéi et op den éischte Bléck erschéngt. Weltwäit sinn haut ongeféier 7.000 verschidde rar Krankheeten beschriwwen. Iwwert 70 Prozent si genetesch bedéngt a fänken oft schonns an der Kandheet un, ma dacks ass de Wee bis zu enger Diagnos laang an ustrengend. Munchereen huet och no engem joerelaange Parcours nach kee klore medezinesche Verdikt. A souguer wann d’Diagnos bis steet, mécht dat de Vécu fir di Betraffen net méi einfach, well et leider fir 94% vun de rare Krankheeten kee kurativen Traitement gëtt. Zu Lëtzebuerg gi mer dovun aus, datt ongeféier 30.000 Leit vun enger rarer Krankheet betraff sinn. An Europa schwätze mer vun 30 Milliounen.

Dat sinn der vill.

Virun allem steet hannert all eenzelnem Mënsch eng Geschicht mat vill Emotiounen, Ängschten a Suergen, d’Ongewëssheet, wéi et weider geet . Dacks trëfft een dobäi och nach op wéineg Versteesdemech an op Virturteeler. Inclusioun ass net ëmmer selbstverständlech…Leider ass dat och haut nach en Deel vun der Realitéit. Wann ech erzielt kréien, datt Kanner wéinst hirem „Aneschtsinn“ ausgelaacht oder gemobbt ginn, Mënsche wéi Aliens ugestarrt ginn a krass Ennerstellunge gemaach kréie, wéi zum Beispill datt si sech dat alles dach just abilden oder ganz einfach keng Loscht hunn ze schaffe, mécht mech dat net nëmme schrecklech traureg mee och nach rosen. Vläicht ass et heiansdo méi einfach ouni ze hannerfroen ze jugéieren, ewéi op e Mënsch zouzegoen. Schued eigentlech, well et de betraffene Mënsche hirt Liewen, dat schonn deels haart a voller Défien ass, géif e bësse méi einfach maachen….”
ctd in comments...

Tonight we launched the Global Chain of Lights in

Tonight we launched the Global Chain of Lights in 🇱🇺 at the Luxembourg City watertower with @anjadibartolomeo @deprez_martine_ @corinnecahen @maurice.bauer

Thanks for your continuous support 💜💚🩷🩵

For more information about rare diseases and the campaign, visit www.alan.lu

#rarediseaseday
#lightupforrare

Last night was our conference at the Luxembourg Ce

Last night was our conference at the Luxembourg Centre for Systems Biomedecine. Professors Abdellah Tebani and Soumeya Bekri from the University of Rouen explained why the path to the diagnosis of a rare disease is so complicated, what the consequences are, but also what is being done to improve and shorten that path.

We were happy that many people participated, both in the LCSB and online, and that many interesting questions were asked, which led to a stimulating exchange between researchers and patients.

A very big thank you to our colleagues from the LCSB for their wonderful support in organizing this conference.

Photos (c) ALAN/Henri Goergen

29th of February = Rare Disease Day 💚🩷💙💜

Sharing = a symbol of solidarity with everyone that lives with a rare disease

Visit www.alan.lu for information about rare diseases and support

#RareDiseaseDay #shareyourcolours #lightupforrare

Thank you for your support. Thank you for your tru

Thank you for your support.
Thank you for your trust.
Thank you for your commitment.
🙏

Last year on Rare Disease Day we asked for your support. Together with our partners, we presented the arguments why we Luxembourg needs a second Plan National Maladies Rares (PNMR) in a position paper. You shared and liked the paper and our campaign in September thousands of times.

The PNMR 2 is now included in the coalition agreement, and we are ready to pull our sleeves up and do our part in its implementation.

#RareDiseaseDay #pnmr2 #merci #lightupforrare

Happy February!! This leap year, Rare Disease Day

Happy February!!
This leap year, Rare Disease Day falls on the rarest day of the year: the 29th of February.

We look forward to raising awareness of rare diseases with our partners throughout this month: on social media, at events, and through the press.
This year, public buildings will be illuminated in the colors of Rare Disease Day again during the last week of February, for the so-called “Global Chain of Lights” - a sign of solidarity with our entire community.

You too can support Rare Disease Day by sharing our awareness photos and videos. So, don’t forget to follow us on our other platforms as well:
- Instagram: https://www.instagram.com/alanmaladiesraresluxembourg/
- TikTok: https://www.tiktok.com/@alan_maladies_rares_lux
- LinkedIn: https://www.linkedin.com/company/10589675

#rarediseaseday
#shareyourcolours

We wish all of our friends, partners, members and

We wish all of our friends, partners, members and patients wonderful holidays with their loved ones 🎄

Thank you for your continued support. We can’t wait for the new projects that 2024 has in store for us.

Please note that our offices will be closed from the 23th of December until the 2nd of January.

Christmas is around the corner 🎄🎅🏻 On Sa

Christmas is around the corner 🎄🎅🏻

On Saturday we held our Xmas party at the Hôtel Dahm in Erpeldange, where our president, @anjadibartolomeo, delighted the little ones with a reading from her newest book Toni Konfettoni 🦊

A huge THANK YOU to our volunteers, Margot, Henri and the young ladies from the CS Fola Esch football team for there help 🙏

(c) ALAN / Henri Goergen

© 2020 ALAN. Impressum

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