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L\u2019article prend l\u2019exemple de deux associations, #ApresJ20 Covid Long France et Covid Long Enfants pour montrer comment les savoirs exp\u00e9rientiels des patients ont \u00e9t\u00e9 int\u00e9gr\u00e9s \u00e0 la d\u00e9finition clinique, \u00e0 l\u2019organisation des parcours de soins et \u00e0 la recherche participative, en lien avec les cliniciens et les chercheurs. 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