• 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
  • How to guarantee quality in translational research for neuromuscular diseases

    It is not easy to go from basic drug research to clinical trials on humans, and for rare neuromuscular diseases the scenario is even harder. Besides, not always all the projects arrive to the human
  • Share4Rare Webinar II: “Following Scientific News for Patient Advocates”

    Patient advocates are in contact with many patients and increasingly involved stakeholders in the health debate. Understanding the latest scientific findings in their respective fields helps advocates
  • Share4Rare Webinar: "Social media in Rare Diseases"

    Social media is a cost-effective way for patient organizations and nonprofits to reach your audience and tell your story. In fact, over four in ten of the world’s population use social media platforms
  • Patient-powered co-design workshop 3

    A few weeks ago the third and final Share4Rare co-design workshop was held in Barcelona. This activity was enabled by The Synergist and it included participants from 7 different countries. What the
  • Patient-powered co-design workshop 2

    The second co-creation workshop was part of the continuing community outreach of Share4Rare, as we work to bring better understanding, acceptance and inclusion of those diagnosed or dealing with rare
  • Share4Rare was born!

    Sant Joan de Déu Foundation has been granted for the European Commission to coordinate the Share4Rare project. This is a collective awareness platform of patients, caregivers, researchers and other