How does your organization investigate?

At Share4Rare, we want to know firsthand the real research needs of patient organizations in the rare diseases field. 

The first notebook will focus on analyzing the experience of the associative network as promoters of research projects. With this first topic, we start the Share4Rare Research Notebooks to regularly put together updated information of interest to patient organizations internationally. 

Through a survey, we want to delve into topics such as what types of research projects are carried out by associations and how they are funded. The survey is open to any patient organization from any country in the world. 

If you are a patient organization, we encourage you to complete the survey. It will only take about 5–10 minutes. The results will give us a more accurate and up-to-date picture of the global situation, and guide our actions to address this situation. 

If you also have a project and would like us to implement it on our Share4Rare platform, the submission period is still open. 

And, if you're not yet part of Share4Rare, we invite you to join the community.