On Tuesday 27 February 2024, Luxembourg's Ministry of Health and Social Security announced details of how the Grand Duchy will mark the 17th edition of International Rare Disease Day which falls on 29 February this year.

For the ministry, the day is dedicated to raising awareness among the general public about rare diseases and their impact on the lives of those affected. Under the aegis of Eurordis, the European alliance of patient associations, thousands of people are committed to supporting awareness-raising actions and events planned in more than 100 countries. In Luxembourg, certain buildings and monuments will be illuminated in “rare disease colours”. This initiative is part of the efforts made in Luxembourg to mark this special day.

Rare diseases: figures and reality

A disease is said to be “rare” if it affects less than one in 2,000 people. More than 6,000 different rare diseases have been identified, and their appearance can begin at birth or in childhood. In Luxembourg, it is estimated that 30,000 people are affected by these diseases, with a few isolated cases for certain given diseases. Rare diseases are mainly chronic and progressive, often accompanied by a motor, sensory or intellectual deficit. The major challenges associated with rare diseases include the phenomenon known as the “diagnostic odyssey” and its wandering, access to appropriate treatments and the need for appropriate medical, nursing and psycho-social care.

The Ministry of Health and Social Security continues its fight against rare diseases

According to the ministry, the first National Rare Disease Plan (PNMR), deployed between 2018 and 2023, marked an important step in improving the rare disease care system (fair access to diagnosis, improvement in overall patient care, support in the entourage of the people concerned…). Also, a census of rare diseases was carried out, followed by an orientation guide intended for people living with a rare disease. Collaboration with the patients' association ALAN - Maladies Rares Luxembourg played a decisive role, notably in the establishment of the Rare Diseases Infoline and a national psycho-social coordination service in partnership with the Luxembourg Hospital Centre (CHL). At the same time, the National Rare Disease Alliance was established to bring together patient associations. It also highlights the measures taken for the prevention of rare diseases and the extension of neonatal screening nationally, with the integration of spinal muscular atrophy (SMA) screening since 2024.

At the end of this first plan, despite significant progress made by PNMR stakeholders, there is still progress to be made. In fact, following the evaluation of the PNMR published at the end of 2023, discussions are currently underway for the development of a second National Rare Disease Plan.

Martine Deprez, Minister of Health and Social Security, stated: “On this International Rare Disease Day, we must come together to support and give hope to all those affected by these often overlooked conditions. Each individual, each family who faces a rare disease is an example of courage and resilience. As Minister, I am committed to promoting research, access to care and awareness so that no one is left behind in this fight against the unknown.”

Join the “Global Chain of Lights” action!

As in previous years, the “Global Chain of Lights” action will illuminate public, emblematic buildings and monuments around the world, including in Luxembourg. Many prestigious sites will be highlighted in blue, pink, green and purple, including the water tower at Ban de Gasperich, the Philharmonie, the blast furnaces of Belval, the headquarters of Spuerkeess, as well as several hospitals, town halls and cultural centres.

The official kick-off of the “Global Chain of Lights” will be given by Minister Deprez in the presence of the college of aldermen of the City of Luxembourg, on 28 February2024 at 19:00

More information on the events organized by ALAN – Maladies Rares Luxembourg as part of International Rare Disease Day is available at https://alan.lu/fr/.