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ALAN receives European award for its commitment

12 August 2020
ALAN’s 25th anniversary: academic session, children’s book & advocacy campaign

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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

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When you live with a rare disease, you are unfortu

When you live with a rare disease, you are unfortunately often confronted with a lack of understanding or misunderstandings, be that from family and friends, from medical staff, or in the workplace

This is why we are organizing a training day in September where you can learn concrete techniques to build a more constructive and effective dialogue with the people around you.

You can find all the details through the link in our bio

#raredisease #patientempowerment #training #maladierare #communication

May is Neurofibromatosis Awareness Month, which is

May is Neurofibromatosis Awareness Month, which is why today we want to share Samia & Mehdi's story with you:
“As a child, Mehdi was always a creative and imaginative soul. He enjoyed dressing up and disguising himself to scare me. His favorite time of the year was Halloween. His favorite artist was Michael Jackson. At 3 years old, he could do the moonwalk.

Mehdi was diagnosed with neurofibromatosis (NF) when he was a baby. NF is a genetic disorder that refers to three different conditions involving the development of tumors that may affect the brain, spinal cord, and the nerves that send signals between the brain and spinal cord, and all other parts of the body.

When he was 12, he had a brain tumor that turned out to be benign. The doctor was able to remove it. He never complained once. He had another in his torso that was taken out too. Later on, a sarcoma grew inside of his left thigh, this time, he didn’t take care of it right away. His leg had swollen. By the time my parents learned about it, it was too late. The tumor had grown too big, and it was no longer operable. We were devastated. We had no idea he would not survive. I miss him so much.

In 2007, Mehdi moved to LA to live with me, where he attended the NY Film Academy School. Initially, he wanted to be an actor, then switched to directing. He received his Bachelor of Fine Arts in Acting for Film in September 2015. Before graduation, he made a short video about living with NF. I watched it with tears in my eyes, filled with pride for everything my brother had accomplished in such a short amount of time. I knew he was destined for greatness. Sadly, Mehdi's life was cut tragically short, and he passed away on January 18th, 2018, at the age of 28.

In memory of my angel brother, I want to help others realize how lethal NF can be. I am on the European board of directors for the Children’s Tumor Foundation. Our goal is to spread awareness and raise funds to find a cure.

Mehdi was a hero, NF Avenger, a handsome young man adored by so many. Gone way too soon."

Samia, Mehdi’s sister

For more information about NF, please visit www.ctf.org

#neurofibromatosis #nfawarness #raredisease

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

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