Share4Rare has very nice support for patient profiles with a diagnosis. They will find that Share4Rare is a system in which they can interact, communicate, and share knowledge with other users sharing the same diagnosis. It will also bridge the user to the most relevant patient organizations according to its disease.
There is however the case of undiagnosed rare disease patients. These patients form distinct populations, with specific needs, but also similar experiences and worries to those of the diagnosed patients. However the provision of resources, the access to and availability of information and the means for sharing experiences and questions for this collective are absent or, at most, scarce.
The question for Share4Rare is whether the platform could benefit the undiagnosed populations by exploiting its AI-based design. This design aims to foster the knowledge on rare diseases through collaborative intelligence built on equity principles. The more information the user shares with the community, the more information the platform can provide in return, under strict confidentiality, privacy, and ethical guarantees.