• 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
  • Intrinsic motivation with a pinch of salt: the conceptualization of badges in Share4Rare

    If you have ever attended a talk on the topic of gamification, you will have noticed that a concept is on everyone’s lips: motivation . And rightly so: it is one of the cornerstones to understanding
  • Markel’s story: the uncertainty of living without a diagnosis

    Markel lives with his parents, María and Vicen, and his older sister Carlota in Urnieta, a small town near San Sebastián, Basque Country (Spain). He will become 13 in August, but he looks much younger
  • Share4Rare: a unique community of patients that you would never have imagined

    One of the greatest challenges that rare disease patients and families have to face is the feeling of loneliness . This emotion is present during the diagnostic process — which may last for years —