On the 7th of May 2018, Luxembourg's Minister of Health, Lydia Mutsch, presented the first National Plan for Rare Diseases to the press and the public.
This ambitious plan is the result of a collaboration between 70 experts from various sectors related to rare diseases, including health, psychology, science, education, research and patient associations. The first National Plan for Rare Diseases will cover the period from 2018 - 2022.
The overall objective of the plan is to better meet the needs and expectations of patients and their families and to better guide, coordinate and structure actions in the field of rare diseases. Five strategic axes have been developed to meet the this objective:
The general axis
Axis A on improving the healthcare system,
Axis B to facilitate access to information on rare diseases, through the creation of a national platform,
Axis C which aims to better recognize the specificity of rare diseases and to promote research,
Axis D to meet the psychological and social needs of patients and their families.
The implementation of a National Plan for Rare Diseases is a must to guarantee equal access to diagnostics, therapy, care and research for all individuals living with a rare disease. "This is just the beginning of the real work, but we place great hopes in this plan, as it should lead to a series of important improvements for people affected by a rare disease.“ says Marc Ries, ALAN’s director.