難病は様々な情報が不足しています。 みなさんの経験や疾患症状、情報が、同じ境遇の方の助けになるかもしれません。 難病をキーワードに、様々な方々（他の難病患者、家族、病院、医師、看護師、福祉関係者、就労関係者、企業、学校、教育関係者、一般の方々など・・・）を繋げていきたい。 患者、家族が抱える悩み・問題点など、皆で力を合わせて克服していきましょう。
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