As part of the 12th edition of the Rare Disease Day, celebrated on 28 February 2019, the Luxembourg Ministry of Health is launching an appeal for solidarity for people with rare diseases.
Every year, on 28 February, Rare Disease Day is celebrated as an opportunity to join forces and raise awareness of the daily challenges of people affected by rare diseases.
The challenges of such diseases becoming increasingly important in smaller countries like Luxembourg, where the critical mass of patients is too small to develop expertise in different medical specialties. Recognising these challenges, the Ministry and the Directorate of Health have committed themselves - together with other actors on the ground and members of the government - to a national plan for the fight against rare diseases (RMNP - 2018-2022), launched in May 2018.
In Luxembourg, the main objective of the National Rare Diseases Plan is to ensure that people with Alzheimer's disease and their loved ones have equal access and quality support to diagnosis, appropriate medical and psychosocial care systems, health insurance coverage and dependency insurance, but also the possibility of meeting the needs and desires of professional and personal fulfillment.
Indeed, rare diseases are one of Europe's public health priorities and European cooperation is considered essential to share scarce knowledge, skills, support and available scientific research. In Europe, around 30 million people are affected by a rare disease, and in Luxembourg, it is estimated that about 30,000 people suffer from a rare disease. Such diseases (considered rare in that they occur in less than one in every 2,000 cases) are often serious and disabling and for most there is no cure. In Luxembourg, the main source of available data is currently the information collected by ALAN: the Luxembourg Association of Assistance for People with Neuromuscular and Rare Diseases, a key expert in the field since 1998.
