Rare Disease Day 2022

Rare Disease Day 2022

On the 28th of February 2022 we celebrate the 15th Rare Disease Day, a day dedicated to raising awareness about rare diseases and their impact on the lives of those affected, including approximately 30,000 people in Luxembourg. Lead by EURORDIS, the international alliance of 984 associations for patients with a rare disease, thousands of people unite each year on the last day of February to organise campaigns and events to raise awareness in more than 100 different countries.

In Luxembourg, the awareness campaign is led by the non-profit organisation and national alliance representing people affected by a rare disease in Luxembourg,  ALAN – Maladies Rares Luxembourg, by the National Rare Diseases Plan of the Ministry of Health and by other public and private partners.

This year, these partners focused their campaign on two actions: the “Global Chain of Lights” and the photo exhibition “RaReflections: Scroll down to find out more about these events !

 

A big THANK YOU to all our partners who supported our awareness-raising campaign for Rare Disease Day 2022!

Be part of Rare Disease Day!

You can support the rare disease community and show your solidarity both online and offline:

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Visit rarediseaseday.org to stream the video and follow us on Facebook and Instagram to see the whole campaign and join the discussion.

The Global Chain of Lights

As in previous years, a highlight of Rare Disease Day is the “Global Chain of Lights” – the illumination of public, or iconic buildings and monuments around the world in the Rare Disease Day colours. The purpose of this illumination is to break the isolation of people affected by a rare disease, to express our solidarity and to raise awareness.

For the “Global Chain of Lights” in Luxembourg, many prestigious buildings are illuminated in blue, pink, green and purple throughout the last week of February and the first week of March 2022, including:

  • The headquarters of Spuerkeess
  • The Philharmonie
  • The Belval blast furnaces
  • The Centre Hospitalier du Nord
  • The Centre Hospitalier de Luxembourg
  • The Centre Hospitalier Emile Mayrisch
  • The Rehazenter
  • Luxembourg-city: the water tower at the ban de Gasperich
  • Contern: the town hall
  • Esch-sur-Alzette: the “Bridderhaus”
  • Grevenmacher: the town hall
  • Hesperange: the centre multifonctionnel CELO
  • Larochette: the church
  • Mamer: the Mamer Schlass and the Maison Citoyenne
  • Mersch: the wall of the Mersch castle
  • Mondorf-les-Bains: the townhall, the “Douaneshaischen”, the grotto next the Altwies church, the Centre Martialis in Ellange
  • Sanem: the town hall
  • Schengen: the Columns of Nations
  • Steinfort: the water tower & the town hall
  • waldbillig: the townhall
  • Weiler-la-Tour: the townhall
  • Wiltz: the Wiltz Castle

The “RaReflections” exhibition

For Rare Disease Day 2022, ALAN presents a photo exhibition entitled “RaReflections”.

The work of acclaimed photographer, Sophie Margue, the photos in the exhibition show 16 children and adults affected by a rare disease in candid moments to reflection and introspection.

Under the slogan, “a rare disease does not define who you are or what your future holds”, the people photographed become ambassadors, carrying a positive and encouraging message. The gaze of the exhibition visitor is naturally drawn to the person on the photograph, rather than their disease, and a fleeting link is established, encouraging one’s own reflection on this eminently complex subject.

The exhibition opening takes place on the 24th of February 2022 at 2.30 p.m. at the “verrière” of Luxembourg’s Central Train Station. The exhibition is organized in partnership with CFL, Spuerkeess and the Ministry of Health.

Exhibition opening program

  • Welcome speech by Alessandra Nonnweiler, Head of the Communication Department and Spokesperson of the CFL
  • Welcome speech by Maurice Bauer, Luxembourg City alderman
  • Welcome speech by Lisa Wells, Head of Marketing of Spuerkeess
  • Welcome speech by Sophie Margue, photographer
  • Speech by Shirley Feider-Rohen, President of ALAN
  • Testimonial by Abby & Julie Scheidweiler
  • Speech by Dr Françoise Berthet, Directeur Adjoint de la Direction de la santé

The traveling exhibition will be at the Luxembourg-city train station until March 31, 2022. Then, it will be hosted by other partner organizations, until the closing in February 2023 in a Spuerkeess branch. Spuerkeess is the sponsor of the photography project.

„Ech weess nach net esou richteg wat an der Zukunft esou op mech duer kennt mee wäert mech duerch näischt bremsen loossen. Ech wënschen mir méi en einfachen Alldag a méi autonom kenne ze sinn. Ech wënschen mir Schoul, Sport a Liewen ewéi all di aner Kanner genéissen ze kennen ouni Hëllef.“

Eve

“A secret to happiness is to let any situation be what it is, not what you think it should be, and then make the most posit’Eve of it”

„Meng Famill ass fir mech dat Allerwichtegst am Liewen. Si si meng Energie, meng Freed a mäi Liewenselixier. Fir mech, fir si a fir all déi aner betraffe Mënsche wäert ech ni opginn an ëmmer weider kämpfen. Never give up!”

„Ech wënschen mer dat ech esou akzeptéiert ginn, wei ech sinn. Talent ist wichtiger als Technik. – Andreas Feininger –”

“I wish understanding, cohesion, inner peace and love for all of us. For my kids and me, that more about rare diseases is being researched!”

„Als junge Schmerzpatientin wünsche ich mir, dass ich zukünftig in Luxemburg die Möglichkeit haben werde, regelmäßig in einer adäquaten Schmerztherapie behandelt zu werden. Eine Schmerztherapie, die mir dabei helfen könnte, meinen Alltag künftig zu erleichtern.”

« Je voudrais être aussi fort et aussi grand qu’un pompier ou un policier pour aider de nombreuses personnes. Dieu ne donne des batailles qu’à ses meilleurs combattants !! »

„D’Jil war ee Sonneschäin. Säi Laache konnt ee verzauberen. Hatt hat immense Charme, ee staarke Charakter, vill Kreativitéit a war ëmmer hëllefsbereet. Mir hu säi Courage a seng Stäerkt bewonnert. D’Jil huet ni opginn an ëmmer seng Zieler virun An behalen. An dat wëlle mir och aner betraffe Famillje mat op de Wee ginn: verléiert de Mutt net an hutt Gedold, well et lount sech ze kämpfen och wann et net ëmmer einfach ass.“

Jos

„Ech hoffen, dass ech weiderhin esou gutt duerch d’Liewe komme wéi bis elo. Esou laang ech mental nach fit bleiwe sinn ech frou.”

„Chronesche Wéi ass een Aspekt vu rare Krankheeten deen ee vu baussen net gesäit mee de Betraffenen awer massiv am Alldag aschränkt a sech op all Beräicher vum Liewen auswierkt. Ech wënsche mir fir d‘Zukunft méi Versteesdemech a Sensibiliséierung vun net Betraffenen, och wat dëse wichtege Volet – de chronesche Wéi – betrëfft.”

“We wish Daniel can participate in clinical trials of potential gene therapy. We wish this potential treatment can significantly improve his life and that he can be an ordinary person, although he will always be special to us.”

„Musik ass meng Leidenschaft, an doraus wëll ech spéider mäi Beruff maachen”

„Auf Flügeln des Gesanges“ roll ich hinaus in die Welt….„Carpe diem“ …. Versuche jeden Tag zu genießen, denn aufgeben ist keine Option….”

Sam

“Anyone has the right to decide who or what you will become – It’s your choice. It isn’t a shame to have scars, they just show how strong you are – They won’t stop me, they give me my (heart)beat.”

„Eng Behënnerung ze hunn ass ni einfach fir ee selwer oder säin Ëmfeld. Ech hoffen einfach dass anerer genau esou vill Chance wäerten hunn wéi ech! Kolleege fir ronderëm ze blödelen an eng Famill wou een ënnerstëtzt. De Rollstull rullt halt just sou séier wéi de Moto deen hannendrunnersteet.”

“Just like Martin Luther King, I have a dream: I dream of a society, – where people with special needs, receive the required assistance, without having to struggle for it, – where respect, tolerance and honesty will govern the way we interact with each other,...``

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