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
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 we
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 limited
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
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 — and
