On the occasion of International Rare Disease Day (Rare Disease Day), held every year on the last day of February, the Health Directorate highlights the major challenges these diseases represent for those affected and their families, and sheds light on the actions taken in Luxembourg to improve their recognition and management.
A disease is considered rare when it affects fewer than 5 people in 10,000. Around 7,000 different rare diseases have been identified, of which nearly 72% are of genetic origin. In Luxembourg, approximately 30,000 people live with a rare disease.
National Rare Disease Plans
The first National Rare Disease Plan (PNMR1, 2018–2023) established a national rare disease guidance unit, launched the national Infoline and integrated Luxembourg into European Reference Networks. The second National Rare Disease Plan (2025–2029) aims to strengthen access to diagnosis and care and to create a national rare disease registry.
ALAN – Maladies Rares Luxembourg and the National Infoline
The ALAN association plays a central role in supporting patients and their families through psychological, administrative and social consultation services. On Rare Disease Day, ALAN and its partners carry out awareness activities including building illuminations and information stands in hospitals.
Newborn Screening
All newborns are currently screened for seven rare diseases. Screening for spinal muscular atrophy was introduced in 2024 and for severe combined immunodeficiency on 1 January 2026.
Useful Information
Infoline: (+352) 2021-2022 – infolineMR@alan.lu