Today, we celebrate Rare Disease Day. These diseases affect up to 5 people per 10,000 inhabitants. They are a diverse group of diseases that often have typical characteristics of a chronic, progressive, degenerative, and sometimes life-threatening course. They usually require demanding health care with complex, long-term diagnostic procedures and costly medications. There are as many as 30 million patients in Europe, and in Slovenia, it is estimated that there are around 120,000 such patients, three-quarters of whom are children.
A national contact point for rare diseases is intended for patients, their relatives, and patient associations. It aims to provide access to quality information on treating rare diseases in Slovenia. It allows users to telephone or electronically contact an informant during office hours and access current, reliable, and understandable information about rare diseases, treatment methods, providers, registries, and associations.
At Lenis, we strive to contribute to the development of science that leads to the discovery of new medicines for rare diseases, while ensuring the smooth distribution of medicines that contribute to their treatment.
