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In this article,we would introduce our unique style of NANBYO (rare and intractable) diseases patient registry led by patient organizations and themselves,named"J-RARE.net".J-RARE.net is mixed services with patient registry (PR) and personal health record (PHR) for NANBYO patients by themselves in Japan.The goal of J-RARE.net is;1) managing PHRs by rare and intractable diseases patientsthemselves to clarify their natural history,2) bridging people who participate in studies both to reveal mechanism of pathogenesis and to develop drug for rare and intractable diseases.