Credit: Henri Goergen / ALAN

On Thursday 24 February 2022, ALAN - Maladies Rares Luxembourg, a local non-profit organisation which supports people affected by rare diseases, in collaboration with the photographer, Sophie Margue, inaugurated a photo exhibition entitled "RaReflections" at the Luxembourg Central Station.

The exhibition, as part of the Rare Disease Day awareness programme, was inaugurated in presence of Mr Maurice Bauer, Alderman of the Luxembourg City, and Dr Françoise Berthet, Deputy Director of the Health Department.

This Monday 28 February 2022, marks the 15th Rare Disease Day, a day celebrated in more than 100 countries to raise awareness about rare diseases and their impact on the lives of those affected, including approximately 30,000 people in Luxembourg.

Rare diseases are often genetic, chronic, progressive and incurable. They lead to many complex challenges for the individuals and families concerned, including a veritable “diagnostic odyssey”, isolation, few treatment options, adaptation of professional or educational paths and the risk of mental health problems.

Under the aegis of EURORDIS, the European alliance of 988 associations of patients suffering from a rare disease, thousands of people commit each year on the last day of February to launch actions and awareness-raising events.

In Luxembourg, the Rare Disease Day awareness campaign is led by the 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 on two awareness-raising actions: the “RaReflections” photo exhibition and the “Global Chain of Lights”

RaReflections exhibition

The photos in the “RaReflections” exhibition capture moments of reflection of sixteen children and adults affected by a rare disease. 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 exhibition, organised in partnership with CFL, Spuerkeess and the Ministry of Health, is intended to naturally draw attention towards the people affected rather than to their illness.

The traveling exhibition "RaReflections" will be presented at the Luxembourg Central Station until 31 March 2022 and later hosted in a Spuerkeess premesis until the end of February 2023.

Global chain of lights

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

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

  • Spuerkeess headquarters in Luxembourg City
  • Luxembourg Philharmonic
  • Furnaces of Belval
  • Centre Hospitalier du Nord
  • Centre hospitalier de Luxembourg
  • Emile Mayrisch Hospital Centre
  • Rehazenter
  • Gasperich: the water castle
  • Contern: the town hall
  • Esch-sur-Alzette: the “Bridderhaus”
  • Grevenmacher: the municipal administration building
  • Hesperange: the CELO multifunctional center
  • Larochette: the church
  • Mamer: the Mamer Schlass and the Citizen's House
  • Mersch: the wall of the Château de Mersch
  • Mondorf-les-Bains: the municipal administration building, the “Douaneshaischen”, church of Altwies, the Martialis Center in Ellange
  • Sanem: the municipal administration building
  • Schengen: the columns of Nations
  • Steinfort: the water tower & the municipal administration building
  • Wiltz: the castle of Wiltz

The illumination of the buildings and the photo exhibition are accompanied by an intensive social media campaign, led by ALAN and its partners throughout the month of February.