• The psychosocial impact of long-term caregiving in rare neuromuscular conditions

    There are so many advantages to getting a clearer picture of how your time and energy is spent. It can help you and others learn new things, and assist in making informed decisions about how to spend
  • Next stop: improving the quality of life in children with leukemia

    In 1975 Professor Giulio J. D’Angio published an article entitled “Childhood cancer in perspective. Healing is not enough”. The author imagined childhood cancer at the end of a long tunnel: looking
  • Research projects on rare paediatric tumors and acute lymphoblastic leukemia are about to start!

    On the occasion of International Childhood Cancer Day, which is commemorated annually on February 15th, Share4Rare launches two new research projects that will help improve scientific knowledge about
  • Share4Rare Pilot for Rare Neuromuscular Diseases

    We are pleased to announce that we will soon be ready to start the research projects on the S4R platform. The ‘My Studies’ area will provide an opportunity for researchers to submit surveys to the S4R
  • How to tell your child about his/her rare disease

    Rare chronic diseases are common enough, affecting 6-10% of the population and have a great negative psychological and physical effect on patients and their families. Men, women but also children may
  • WDO Member Meeting

    The main aim of the WDO Member Meeting was to gather patient organizations, scientists, researchers and experts working in the Duchenne field to share and build on each other’s knowledge to create
  • 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