• 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
  • Tips for preparing your summer holidays

    Many families will have already started the summer break period . Occasionally, if you do not prepare on time everything you need for your trip, holidays can be more of a nightmare than a period of
  • 10 things a parent of a child affected by a rare disease wishes everyone knew

    We worry we will bore our friends with our concerns over our child’s disease, and when you say “ Do you want to talk about it ?” “ How are you feeling? Are you coping? ” it really helps us feel like
  • 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
  • The genetic and biochemical origin of the PI3K related overgrowth syndrome (PROS)

    Cells replicate obeying to extra and intracellular signaling pathways. External signaling includes stimuli from hormones , inflammatory factors or other external influences that can alter the cells
  • 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
  • Understanding the Sturge-Weber syndrome

    The Sturge-Weber syndrome is characterized by the deficient development of certain blood vessels, leading to structural abnormalities; especially in the brain, skin and eyes. Three features are
  • Lluís Montoliu: "Patients have taught me everything I know"

    Lluís Montoliu is a pioneer in the introduction, use and dissemination of CRISPR technology in Spain. Author of more than a hundred scientific articles, he has been involved in the field of biomedical
  • Safe motherhood in rare disease

    " Duchenne muscular dystrophy is a genetic disorder characterized by the progressive loss of muscle . Duchenne is caused by a mutation in the gene that encodes for dystrophin , a protein that is