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.