Health is today the number 1 use of Internet.
E patients are health consumers who use the internet to gather, share, produce information about a medical condition of particular interest to them.
Health social networks are becoming an important entity of influence in the medicine of the future, as they are generated bottom-up rather than top-down, by patients.
The European Project for Rare Diseases National Plans Development (EUROPLAN) has addressed one unanswered question to date: “what is the scope of patient-driven research?” Identification of needs and priorities for translational and social research, modes of fostering them and promotion of interdisciplinary cooperative approaches has been largely recommended.
Beside the success stories of “orphan drug development” and genetic research during the last decades, family story telling and family sketches analysis show minor progress in the clinical management and day to day care despite tremendous unmet needs. Quality of Life and measurements of the burden of the disease have been neglected. A call to action for active research in the field of human and social sciences is urgent.