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11 Establishment of the Intractable Disease Association of Shiga KATSURAGI Teizo Abstract: Although much research has been done on the activities of individual patients associations, little research has been conducted on prefecture-wide organizations that consist of different patients associations. The purpose of this article is to investigate the first stage of the establishment of the Intractable Disease Association of Shiga (Shiga-Nanbyoren), a prefectural organization of patients associations that each focuses on a separate intractable disease. The author examined the journals and meeting records of Shiga-Nanbyoren and interviewed group members in order to clarify ( ) the background and purpose of the group s establishment and ( ) the difficulties the founding members faced. Shiga-Nanbyoren was established in by people with diseases. Initially, Shiga-Nanbyoren s activities were carried out solely by the volunteer efforts of some of the patients. Today, the organization continues to have official monthly meetings, although some members cannot attend them because of impaired physical conditions. The members have always helped each other. Through the members close cooperation and resolute intention to improve the circumstances of the patients lives, the association has continued its activities in spite of many difficulties. The major problems at present include the shortage of active leading members and insufficient funds. Keywords: Intractable Disease Association of Shiga, patients rights movement, nanbyo, intractable disease, funds

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