Share4Rare had its place in the Informative Session for Patients and Families with Neuromuscular Diseases at Hospital Sant Joan de Déu Barcelona
Last Saturday, October 27th, the Share4Rare project was presented at the 5th Informative Session for Patients and Families with Neuromuscular Diseases that is annually celebrated at Hospital Sant Joan
How to go from a good idea to a great one: a case study in co-creation
The digital environment is shaping the way we interact and interpret the healthcare environment. It has the power to erase borders, overcome old challenges and bridge the gap between very different
Poster prize for Share4Rare!
Share4Rare received an "Innovative project" prize on their poster the at the Better Medicines for Children Conference in Brussels! This conference is organized by the European Forum for Good Clinical
How to guarantee quality in translational research for neuromuscular diseases
It is not easy to go from basic drug research to clinical trials on humans, and for rare neuromuscular diseases the scenario is even harder. Besides, not always all the projects arrive to the human
Patient-powered co-design workshop 3
A few weeks ago the third and final Share4Rare co-design workshop was held in Barcelona. This activity was enabled by The Synergist and it included participants from 7 different countries. What the
Patient-powered co-design workshop 2
The second co-creation workshop was part of the continuing community outreach of Share4Rare, as we work to bring better understanding, acceptance and inclusion of those diagnosed or dealing with rare
Share4Rare was born!
Sant Joan de Déu Foundation has been granted for the European Commission to coordinate the Share4Rare project. This is a collective awareness platform of patients, caregivers, researchers and other