Luxemburg : First Information Meeting on the Future National Plan on Rare Disorders

It has been estimated that 30,000 people suffer from a rare disorder in Luxemburg. Even if Rare Disorders are very different one from the other, patients in Luxemburg face the same difficulties : confusion around diagnosis, lack of scientific knowledge, few therapies and appropriate care, high cost of care. The Plan will have four main aims over five years (2018-2022) :

  • Healthcare system and rare disorders patients follow-up ;
  • Creating an online information platform ;
  • Codification, registries and research on rare disorders ;
  • Social services.
The Plan will also reflect the recommendations of EUROPLAN  (2012-2015), a European project that supports the development of National Plans for rare disorders. It had to be written and sent for agreement to the Minister of Health by the end of 2017.