• A disease with no name: Edu’s story

    Sandra is Edu 's mom, a 5-year-old boy who suffers from a rare disease. When Edu was born he could not open his eyelids , but doctors did not find that a reason for not discharging him from hospital.
  • Share4Rare principles for co-creation with patients

    The clue is in the title. Patient engagement (PE) cannot happen without patients , and so it is clear that any materials, initiatives, or projects linked to patient engagement can also not happen
  • Share4Rare. A platform as strong as its users

    As you might already know, Share4Rare is a safe space where patients and carers can connect , share knowledge , and get involved in scientific research . It is a place where geographical, physical or
  • The conceptualization of the Share4Rare brand

    A few months after arriving at Òmada , general director Inma Chapí presented us a new project that we were going to address from the very beginning: an exchange platform for rare disease patients and
  • We are looking for Share4Rare ambassadors!

    Adult rare disease patients and their family members become experts in finding medical information, supporting research initiatives and leading patient organizations. For the most ultra-rare diseases,
  • How to learn more about undiagnosed diseases thanks to the involvement of diagnosed patients in Share4Rare

    Diagnosing a rare disease can be a highly complex mission and it often requires great amounts of time. In many cases, several years pass until a correct diagnosis is confirmed by medical evidence. It
  • Some ideas behind the technical design of Share4Rare

    Having a black screen as your main tool of trade entails a number of things. One such thing is that you tend to be seen as a mere facilitator, someone whose work is limited to putting the ideas others
  • What is it like to have a sibling with a rare disease?

    Taking care of a loved one who is chronically ill, having a highly disabling pathology such as a rare disease, can be as rewarding as it is difficult and stressful . This kind of diseases entail for
  • Share4Rare criteria for meaningful patient involvement in clinical research

    Patient involvement in medicines development continues to grow, as all stakeholders involved in developing accessible medicines realize they should be involving the end customer - the patient - from
  • Stories of the Share4Rare hackathon: helping patients and families to face rare diseases

    Share4Rare’s first RareHacks hackathon was celebrated on July 5-7th in Barcelona . In total, 45 participants were involved in building an innovative chatbot to solve the challenge regarding the
  • 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
  • Did we need to reinvent the wheel? Why Share4Rare adopted a layered approach to user interaction

    It was one year ago, in the summer of 2018, when I attended my first meeting of the Consortium of the Share4Rare project . The project had been going on for a while and the foundations were laid, but