On 16 June 2017, a first briefing was held on the premises of the Ministry of Health on the progress of the reflection work on the future National Plan on Rare Diseases.

30 million Europeans are estimated to be affected by a rare disease, meaning that around 30,000 people are affected by a rare disease in Luxembourg.

Despite the diversity and particular symptomatology of each rare disease, most patients have similar problems: difficulty accessing diagnoses, lack of scientific knowledge, lack of appropriate care and therapies, lack of psychosocial support, and social consequences, such as isolation or school issues.

In Luxembourg, the Luxembourg Association for Assistance to People with Neuromuscular Diseases and Rare Diseases (ALAN) plays a key role in the effort to confederate the different patient associations at the national level.

Indeed, rare diseases are one of the public health priorities in Europe, and European cooperation is essential to share scarce knowledge, skills, support and available scientific research. In Luxembourg, the National Rare Disease Plan pursues the objective of providing patients and their families with equal access and quality care to diagnosis, adapted medical and psychosocial care systems, dependency insurance, as well as the possibility to satisfy professional and personal development needs and desires.

The plan will focus on four main areas: the care system and the management of patients with rare diseases, the creation of a virtual information platform, coding, registry and research on rare diseases, and social services.

In addition, the national plan will reflect the recommendations of Europlan, a European project for the development of national plans for rare diseases co-funded by the European Commission.

The plan will be carried out over 5 years (2018-2022) and will have to be drafted and submitted to the Minister of Health by the end of 2017.

The meeting last week constitutes a fundamental first step in Luxembourg for the fight against rare diseases.