Luxembourg "Lights It Up" for Rare Disease Day

Luxembourg will be lighting up some of its flagship buildings as part of Rare Disease Day, an international awareness day held annually on 28 February.

This Sunday marks the 14th 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. This year's campaign, led in the Grand Duchy by the non-profit association ALAN - Maladies Rares Luxembourg and its partners, focusses on the illumination of flagship buildings as a sign of community and solidarity.

A disease is considered "rare" if it affects fewer than 1 in 2,000 people. According to a recent study, around 5% of the world's population live with a rare disease, including around 30,000 people in Luxembourg. Many of these diseases are genetic, chronic and progressive. Rare diseases have an impact on the quality of life and can shorten life expectancy, since there are very few drugs and treatments. In addition to the lack of therapy, there is often a lack of information, specific expertise and coordination.

"Light It Up" action in Luxembourg

The official launch of the “Light It Up” action took place on Wednesday evening, with the illumination of the water tower of the Ban de Gasperich in the presence of Paulette Lenert, Luxembourg's Minister of Health, and Patrick Goldschmidt, Alderman of the City of Luxembourg, who is responsible for the integration of people with specific needs.

In addition to the water tower, other buildings across the country will be lit up in Rare Disease Day colours during the last week of February 2021, including among others:

- Esch-sur-Alzette town hall and the blast furnaces of Belval
- CAPE - Centre des arts pluriels Ettelbruck
- Mamer Castle and Maison Citoyenne de Mamer
- Wiltz Castle
- the Columns of Nations in Schengen
- Centre Hospitalier de Luxembourg (CHL)
- Centre Hospitalier Emile Mayrisch (CHEM)
- Rehazenter

Alderman Patrick Goldschmidt commented: “Rare diseases, like any serious illness, not only affect those affected, but also weigh heavily on family and loved ones. All too often, these people face isolation and misunderstanding. We believe that it is our responsibility to provide our support to associations whose missions consist of raising awareness among the general public and supporting patients and their families".

The illumination of buildings will be accompanied by a social media campaign, led by ALAN - Maladies Rares Luxembourg, the Ministry of Health, the Centre Hospitalier du Nord (CHdN) and the other partners of the “Light It Up” initiative.

Health Minister Paulette Lenert noted: “Rare diseases present an important issue for the patient, their loved ones, healthcare services and the government. We are well aware of the problems and challenges of patients. To fight against rare diseases, the Ministry of Health is committed - together with the actors in the field - in a national plan, the Plan national maladies rares (PNMR)​. Our desire is to ensure that people with a rare disease and their loved ones have fair access to diagnosis, appropriate medical and psycho-social care, and health insurance and broad and egalitarian long-term care insurance".

On the sidelines of events dedicated to informing and raising awareness about these diseases, the Ministry of Health is organising a web-conference on the national rare diseases plan, on Friday 26 February 2021 at 14:00. Bringing together experts in the field, this annual meeting will provide an opportunity to take stock of the progress of the plan's work, as well as to present the many European initiatives underway and the prospects in this field. The full programme is available on the www.sante.lu portal. Attendance is free but registration is required here.