• 10 things we learned from choosing chatbots as a theme for our rare disease hackathon

    This weekend the Share4Rare hackathon RareHacks took place in Barcelona . During these three days, over 45 data scientists, computer scientists and clinicians joined forces in response to the needs of
  • What is infantile myofibromatosis?

    Infantile myofibromatosis (IM) is a rare benign soft tissue tumor, meaning it can grow wherever there is soft tissue – this includes many tissues in our body, the most prevalent areas are the skin and
  • RareHacks: open registration!

    The access of rare disease families to quality , curated information about a particular disease is difficult due to many factors, including data gathering, curation, quality or unbiased interpretation
  • What are the causes of neuroendocrine pancreatic tumors (pNETs)?

    Genetic origin of pNETs As it seems, there are several risk factors that may make a child or adolescent more likely to develop a neuroendocrine pancreatic tumor or pNET . These risk factors are
  • How to detect and tackle pseudoscience

    Why do we tend to believe pseudoscience? We are at a time where many people are mistrustful of experts: in climate change, in politics, and to a certain degree in health care. Due to an expanding
  • 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