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
Share4Rare Webinar III: “Fundraising for Nonprofits”
Nonprofit organizations are likely to have limited time and resources to accomplish maximum return on investment. Effective fundraising has the potential to increase donations, grants and gifts. This
The POWER-tool: a new effective method that helps involving patients in clinical trial design
Research on rare diseases is often difficult to perform mainly because there are only a small number of cases to study, resulting in a vaguely representative statistical analysis of the data. For
Cancer therapies assessment indicators need to be reviewed according to a novel study
A recent publication on JAMA Internal Medicine refutes any association between progression-free survival (PFS) and health-related quality of life (HRQoL) in cancer patients. In other words, delaying
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
Share4Rare Webinar II: “Following Scientific News for Patient Advocates”
Patient advocates are in contact with many patients and increasingly involved stakeholders in the health debate. Understanding the latest scientific findings in their respective fields helps advocates
Share4Rare Webinar: "Social media in Rare Diseases"
Social media is a cost-effective way for patient organizations and nonprofits to reach your audience and tell your story. In fact, over four in ten of the world’s population use social media platforms
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