• RareHacks: uniting experts to build the future of the rare disease community

    What is RareHacks? RareHacks is a hackathon event that brings you the opportunity to apply data science tools, including machine learning and natural language processing algorithms, to a real
  • The POWER-tool: a new effective method that helps involving patients in clinical trial design

    Research on rare diseases is often difficult to perform mainly because there are only a small number of cases to study, resulting in a vaguely representative statistical analysis of the data. For
  • Cancer therapies assessment indicators need to be reviewed according to a novel study

    A recent publication on JAMA Internal Medicine refutes any association between progression-free survival (PFS) and health-related quality of life (HRQoL) in cancer patients. In other words, delaying