- 難病情報センター
- 特定疾患という国が認定した難病の医療情報を患者向けに判りやすく公開。http://www.nanbyou.or.jp/
- あせび会
- 難病患者と家族を対象とする医療・福祉相談を行う。ニュース、イベント案内、関連リンク。http://www.asebikai.com/
- ピエール・ロバン症候群と口蓋裂の子供を育てる父母の会
- 病気の解説と治療法、関連書籍・論文・医療機関・団体の一覧。http://www.harahara.net/pr/
- 大阪難病研究財団
- 特定疾患一覧と解説、治療方針、看護・介護についての情報、患者会リストを掲載。http://www.nanbyo.or.jp/
- 島根難病研究所
- 島根の地域医療と難病に取り組む。移植をテーマとした別サイトで月刊誌を公開。http://www.nanken.or.jp/index.html
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