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 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
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
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
RareHacks: open registration!
The access of rare disease families to quality, curated information about a particular disease is difficult due to many factors, including data gathering, curation, quality or unbiased interpretation